Awareness of CKD as an outcome of

NKDEP SURVEY OF AFRICAN-AMERICAN ADULTS’ KNOWLEDGE, ATTITUDES AND BEHAVIORS

RELATED TO KIDNEY DISEASE

REPORT FROM THE BASELINE STUDY

SEPTEMBER, 2003

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TABLE OF CONTENTS

Introduction to the Project............................................................ 5

Methodology....................................................................................5

Data Collection....................................................................................5

Sample Characteristics.....................................................................8

Data Analysis and Reporting ............................................................9

Summary of Findings ..................................................................11

Detailed Discussion of Findings..................................................21

1. Awareness of CKD ...........................................................................21

General Health Problems Affecting African Americans ........................21

Awareness of CKD as an outcome of Diabetes and/or Hypertension ................................................................ 24

Diabetes ...............................................................................................24

Hypertension .......................................................................................25

Aided Awareness of CKD ........................................................................26

Perceived Commonness of CKD .............................................................27

2. Knowledge of CKD ..........................................................................28

Knowledge of the Definition of Kidney Disease ....................................28

Perceptions Regarding Symptoms of Signs of Kidney Disease ..........32

Perceived Existence of Symptoms ....................................................32

Perceived Symptoms of Kidney Disease ..........................................34

Perceived Causes of Kidney Disease .....................................................36

Perceived Causes................................................................................36

Aided Awareness of Diabetes as a Cause of Kidney Disease ........38

Aided Awareness of Hypertension as a Cause of Kidney Disease 39

Perceived Risk Factors ............................................................................41

Perception of Family Risk ..................................................................43

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3. Prevalence of Risk Factors .............................................................46

Prevalence of Diabetes in the Sample ....................................................46

Prevalence of Hypertension in the Sample ............................................47

Family History of Kidney Failure..............................................................48

4. Experience with Diabetes ...............................................................52

Perceived Seriousness of Diabetes ........................................................52

Negatives Effects of Diabetes .................................................................53

Knowledge of Routine Tests for Diabetes ..............................................55

Steps Taken by Patients to Manage Diabetes ........................................57

Self-Ratings of Compliance .....................................................................59

5. Experience with Hypertension .......................................................60

Perceived Seriousness of Hypertension ................................................60

Negatives Effects of Hypertension .........................................................61

Knowledge of Routine Tests for Hypertension ......................................63

Steps Taken by Patients to Manage Hypertension ................................65

Self-Ratings of Compliance .....................................................................67

6. Perception of Personal Risk for CKD ............................................68

Self-Risk Rating .......................................................................................68

Reasons for Self-Risk Rating ..................................................................70

Reasons for higher-than-average self-risk rating ...........................72

Reasons for lower-than-average self-risk rating .............................74

Reasons for average self-risk rating ................................................77

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7. Screening and Prevention of CKD .................................................80

Knowledge of Tests for Detection of CKD .............................................80

Frequency of Testing for CKD .................................................................82

Time Since Last Test ..........................................................................82

Perception that CKD is Preventable .......................................................84

Perception that CKD is Treatable ............................................................85

Knowledge of Steps for Prevention/Treatment ......................................86

8. Patients with Kidney Disease .........................................................88

Prevalence of Kidney Disease .................................................................88

How CKD was Detected ...........................................................................88

Test Status of Patients .......................................................................88

Time Since Last Test ..........................................................................88

Treatment for CKD ....................................................................................89

Compliance with Treatment .....................................................................89

9. Communicating about CKD ............................................................90

Past-Year Discussions of Kidney Disease .............................................90

People with Whom Respondents Discussed Kidney Disease..............91

Content of Kidney Disease Discussions with Health Care Providers ...................................................................92

Encouraging Others to be Tested ...........................................................93

10.Exposure to Information about CKD...............................................95

Past-Year Recall of Kidney-Disease Related Information .....................95

Sources of Kidney Disease Information .................................................97

Proactive Search for Kidney Disease Information................................99

Awareness of the Message: You Have the Power to Prevent Kidney Disease....................................................................100

AppendixQuestionnaire......................................................................................... 101

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INTRODUCTION TO THE PROJECT

The National Kidney Disease Education Program (NKDEP) is a pioneering program to reduce the economic, social and human burden of chronic kidney disease (CKD) and kidney failure by encouraging prevention, early detection and treatment of CKD among high-risk individuals and early CKD patients. The first phase of the program is targeted at African Americans who are at higher risk for CKD. In this phase, community-based communication programs are being implemented at four pilot sites1 to educate African-American adults (30 and older) to assess their risk status, to persuade those who are at risk to get tested regularly for CKD and take steps to prevent CKD, and to motivate those who have CKD to take steps to slow its progression. The pilot programs are also educating primary care providers in these communities to monitor at-risk patients more effectively, communicate better with patients regarding CKD, and combat early-stage CKD more aggressively through tighter glycemic and blood pressure control and appropriate medication.

This research study, the first-ever comprehensive survey of African Americans’ beliefs, attitudes and behaviors related to CKD, was conducted to provide a baseline for measurement of program effects, and to validate the model of program effects that has guided the development of the program. The results of this study and a follow-up survey will also form the basis of the communication strategy for the next phase of the program.

METHODOLOGY

Data Collection

A telephone survey of adult African-American residents aged 30 and older was conducted between February 13 and April 22, 2003. The purpose of the study was to learn about the target population’s knowledge, attitudes and behaviors regarding kidney disease and its two main medical precursors, diabetes and hypertension.

In the first field period, a total of 1,616 interviews were collected between February 13 and April 2, 2003 in four U.S. cities—Atlanta, Georgia; Baltimore, Maryland; Cleveland, Ohio; and Jackson, Mississippi.2. Following the initial field period, an additional 401 interviews were collected in three other U.S. cities (New Orleans, Louisiana; St. Louis, Missouri; and Memphis, Tennessee) between April 10 and April 22, 2003 selected to serve as a composite control site. The pilot and control communities were chosen for inclusion in the study based on their high proportions of African-Americans and for similar demographic characteristics.

The survey questionnaire (See Appendix A) was formatted and programmed into the Ci3 WinCati Computer Assisted Telephone Interviewing system. The questionnaire was then pretested among a sample of 11 eligible African Americans aged 30 and older. The pretesting procedures helped to inform project staff on key training issues and assisted in rewording of several response formats.

1 Cleveland, OH; Baltimore, MD; Atlanta, GA; and Jackson, MS.2 Data collection was performed by the Survey Research Center (SRC) at the University of Georgia.

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The design of the study called for conducting a total of 400 telephone interviews with African- American residents from a random-digit dial probability sample drawn in each of the four pilot cities and the composite control site. To increase the likelihood of encountering an African-American household, a race-targeting procedure was used: census tracts with 30% or more density of African-American residents were selected to draw the RDD sample in each city. No respondent selection method was used to select the individual interviewed within the household; rather, any African-American age 30 or older was eligible to complete the interview. Interviewing occurred during both day and nighttime hours, and each record in the sample was attempted a minimum of 10 times before a telephone number was retired. Supervisors were assigned to monitor interviewers in progress using both audio and visual monitoring techniques.

Assuming the sampling procedure outlined above produced a random sample of the population of interest, the estimated theoretical standard error associated with the sample estimates obtained (n=2017) ranges from .011 (when the population estimate is 50%) to about .005 (when the estimate is 95% or 5%).

The corresponding sampling margin of error of the population estimates at the 95% confidence level is 2.2% when the estimate is close to 50% and then declines at the upper and lower ends of the scale.3 The maximum sampling margin of error is about 2.4% for the pilot sites (n=1616), and about 4.9% within each individual city, and across all three cities comprising the composite control site (n = 400).

In addition to sample size, the quality of a sample is determined by cooperation rate; that is, the proportion of members of the original sample who provide an interview. The overall cooperation rate for this study was 42.4%, i.e. 42.4% of the eligible respondents contacted for the survey completed the interview.4 Table 1 details results of the telephone procedures for both the pilot site sample and for the control sample. The cooperation rate was slightly higher in the pilot sites than in the control sites.

3 The standard error is used to estimate the sampling margin of error of the estimates (i.e., the probable difference in results between interviewing the entire population of African-Americans 30 and older in the target cities versus taking a scientific sample of the population) that extend 1.96 standard error units around that value (i.e. the 95% confidence level). The standard error is calculated according to the following formula:

P +/- 1.96 * (standard error)4 Cooperation rate was computed using the American Association for Public Opinion Research (AAPOR) guidelines for reporting results of survey. The rate computed here is AAPOR Cooperation Rate 3 (COOP3). COOP3 = Interviews/(Interviews +Partials + Refusals).

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Table 1: Final Disposition of Telephone Procedures

PILOT SITE SAMPLE CONTROL SAMPLEN % Category N % Category

InterviewComplete 1616 97.2 401 99.8Partial 47 2.8 1 1.2Total 1663 100.0 402 100.0

Eligible, Non-InterviewFinal Refusal 1819 53.5 877 40.4Resp. Never Available 25 0.7 22 1.0Ans. Machine 681 20.0 920 42.4

OtherDead 0 0.0 1 0.1Phys./Mentally Unable 62 1.8 54 2.5Language Unable 70 2.1 44 2.0Misc. Unable 2 0.1 5 0.2Callback, Resp. Not Selected

682 20.1 223 10.3

Callback, Resp. Selected 59 1.7 25 1.1Total 3400 100.0 2171 100.0

Unknown Eligibility: Non-Interview Unknown if Household

Busy 169 13.8 292 15.9No Answer 913 74.7 1492 81.3Technical Phone Problems 120 9.8 43 2.3Unknown: Other 19 1.6 7 0.4Total 1221 99.9 1834 99.9

Not EligibleOut of sample 2 0.1 0Fax/Data Line 626 7.6 568 8.2Non-working number 175 2.1 69 1.0Disconnected number 1720 21.0 2195 31.6

Technological circumstancesNumber changed 59 0.7 55 0.7Cell phone 34 0.4 12 0.2Call forwarding 163 2.0 112 1.6

Not a householdBusiness/government/other

915 11.2 942 13.5

Institution 9 0.1 1 0.1Group quarters 0 0.0 0 0.0No eligible respondent 4493 54.8 3001 43.1Total 8196 100.0 6955 100.0Cooperation Rate 46.4 31.4

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Sample Characteristics

GenderThere were approximately 2.5 times more women than men represented in the sample population (72% and 28%, respectively).

AgeThe sample was fairly evenly distributed among different age categories with the majority of individuals falling between the ages of 35 and 54. Individuals aged 30 to 34 comprised 15% of the sample population, 28% were aged 35 to 44, 31% were aged 45 to 54, and 11% were aged 65 or older.

IncomeOne-quarter of the sample population (413 respondents) did not report their income level. As such, all the income-related descriptive figures are computed based on the 1604 respondents who did report their income level.

Of these respondents, one-quarter reported having an income of less than $20K. A larger percentage of respondents in the control sites (31%) reported having an income of less than $20K than did those in the pilot sites (23%).

About half of the sample for which incomes were reported (52%) was in the low- to middle- income range, reporting annual household incomes between $20K and $60K per year, 30% of which earned between $20K and $39K. While slightly more than one-quarter of the respondents in the pilot sites (28%) reported having an income of $20K to $39K, a larger percentage of individuals in the control sites (38%) claimed the same level of earnings. About one-quarter of the total sample population (23%) had an income of $40K to $59K.

Close to one-tenth (11%) of those who reported their income had an income of $60K to $79K. More than twice as many respondents in the pilot sites (12%) reported having this income than did those in the control sites (5%). Six percent of the valid sample had an income of $80K to $99K, and another 6% earned $100K or more. The percentages for these high-income groups were consistent between the pilot and control site respondents.

EducationClose to two-thirds of the sample population did not graduate from college and one-third had no more than a high school education. Of the total sample population, 8% had less than a high school education and 23% were high school graduates. Nearly one-third (31%) said they had some college education. A larger percentage of respondents in the control sites (38%) reported having some college education than did respondents in the pilot sites (30%). Less than one-tenth (8%) of the total sample population had graduated from community college (AA degree), while 17% were college graduates, 4% had some graduate school education and 9% held a graduate degree.

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The table below depicts the breakdown of the total sample by demographic sub-groups and compares each factor to the relevant US population estimates for African Americans.5

Table 2: Comparison of the Sample Demographics to the National Estimates for the African-American US Population

Sample (Percent) Population (Percent)Gender Male 28 Male 46

Female 72 Female6 54Age

30-34 15 30-34 1535-44 28 35-44 3145-54 31 45-54 2555-64 15 55-64 1465 or older 11 65 or older7 15

IncomeLess than $20K 25 Less than $20K 25$20K - $39.9K 30 $20K - $24.9K 8$40K - $59.9K 23 $25K - $34.9K 14$60K - $79.9K 11 $35K - $49.9K 15$80K - $99.9K 6 $50K - $74.9K 15$100K or more 6 $75K or more8 12

EducationLess than High School 8 Less than High School 21High School Graduate 23 High School Graduate 34Some College 31 Some College 28AA Degree 8College Graduate 17 College Graduate 12Some Graduate School 4Graduate Degree 9 Graduate Degree9 5

Data Analysis and Reporting

This report presents the overall sample descriptive statistics and variation by specific demographic and medical sub-groups. The information has been grouped into 10 topic areas, and

5 US Census Bureau: The Black Population in the United States; March 2002 (ppl-164). Accessed on July 15th 2003 at: http://www.census.gov/population/www/socdemo/race/ppl-164.html.6 US Census Bureau: The Black Population in the United States (Table 1); March 2002 (pp1-164). Accessed on October 24, 2003 at http://www.census.gov/population/socdemo/race/black/ppl-164/tab01.xls.7 US Census Bureau: The Black Population in the United States (Table 1); March 2002 (pp1-164). Accessed on October 24, 2003 at http://www.census.gov/population/socdemo/race/black/ppl-164/tab01.xls. 8 US Census Bureau: The Black Population in the United States (Table 14); March 2002 (pp1-164). Accessed on October 24, 2003 at http://www.census.gov/population/socdemo/race/black/ppl-164/tab14.xls.9 US Census Bureau: The Black Population in the United States (Table 7); March 2002 (pp1-164). Accessed on October 24, 2003 at http://www.census.gov/population/socdemo/race/black/ppl-164/tab07.xls.

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the sequence of reporting does not follow the sequence of questions on the survey instrument. The survey instrument is attached for your reference (Appendix 1) and the questions being analyzed are noted at the beginning of each section.

As the table in the previous section shows, the sample for this study does not demographically match national statistics for the African-American adult population. Please note that this report reflects marginals based on unweighted data.10 Variation in response across demographic sub-groups is reported when it was statistically reliable or when certain trends or patterns were visible in the data.

Respondents were also categorized into several relevant medical classifications.

The variable Risk Status identifies those respondents who indicated they had at least one of the three key risk factors: hypertension/high blood pressure, diabetes, or a family history (of a close blood relative) of kidney failure. Patients with Diabetes were identified based on Q6 of the survey where patients were asked if they had ever been diagnosed with diabetes. A similar question (Q10) was used to identify Patients with Hypertension. The variable Family History for Kidney Failure identifies those respondents who reported that a close blood relative (parent, child, sibling or grandparent) had kidney failure. This categorization was based on responses to Questions 24, 24a and 24b.

Test Status separated respondents based on whether or not they had ever been tested for the disease (Q7 of the survey).

Knowledge of Kidney Disease Definition was derived from the question where respondents were asked what kidney disease is. Respondents who described the disease as a stoppage or reduction of function (response options 5, 6, or 7 to Q12) were categorized as “Understands CKD” and those who did not were identified as “Does not understand CKD.”

The sample breakdown with respect to these computed variables is shown below.

Total Sample (Percent)Patients with Diabetes

Family History of CKD

Yes 13 Yes 11No 86 No 88

Patients with Hypertension

Knowledge of Kidney Disease Definition

Yes 34 Does not understand 51No 65 Understands CKD 49

Testing for Kidney Disease

At Risk for Kidney Disease

Tested 35 At risk 45Never tested 65 Not at risk 55

10 Once the client has selected an appropriate weighting scheme, results will be updated to reflect the changes.

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SUMMARY OF FINDINGS

1. Awareness of Kidney Disease

When asked to name the top three health concerns facing African Americans, respondents named Hypertension (61%), Diabetes (55%) and Heart Disease (45%) most frequently (Question 2). Cancer and HIV/AIDS were also mentioned by substantial proportions of respondents. Only 3% mentioned kidney disease or kidney failure.

□ Younger respondents were more likely to mention cancer, HIV/AIDS, and, to a lesser extent, diabetes. Mention of hypertension was highest among the middle age groups while mention of heart disease increased among older respondents.

□ People with lower incomes were more likely to list cancer and those with higher incomes named hypertension more often. Similarly, those with higher education listed diabetes and hypertension more often, while those with less education mentioned cancer more.

□ Those who had diabetes or hypertension, those who had been tested for kidney disease and those who knew what kidney disease is also listed diabetes and hypertension as top health concerns more frequently.

Awareness of kidney disease was also assessed in the context of negative health effects of diabetes and hypertension. When asked to list the negative health consequences of untreated diabetes, only 17% mentioned kidney disease (Question 4). Even fewer (8%) mentioned kidney disease as a negative health outcome of hypertension (Question 8). While respondents who had diabetes and hypertension were more likely to mention kidney disease as an outcome of these illnesses, these proportions were also relatively small; only 29% of patients with diabetes mentioned kidney disease as an outcome of diabetes and 11% of patients with hypertension mentioned it as a consequence of leaving hypertension untreated.

When specifically asked whether they are aware of an illness called kidney disease, virtually all (90%) respondents said yes (Question 11).

□ Those with diabetes were more likely to say they are aware of this illness, but awareness was not higher for those with hypertension or a family history of kidney failure.

Most respondents thought kidney disease is somewhat (51%) or very (43%) common (Question 25). This number was fairly consistent across all sub-groups with minor variations in the proportion of people who regarded kidney disease as very common.

2. Knowledge of CKD

When asked to define what kidney disease is, about half (49%) correctly identified it as a stoppage or reduction in kidney function (Question 12). Another 30% gave vague or incorrect responses, including: general disease or ailment of the kidneys (25%), an infection of the kidneys (6%), kidney stones (1%) or a type of cancer (1%). About a fifth (21%) said they did not know or did not remember what kidney disease is.

□ Women seemed more knowledgeable than men. Younger respondents and those with more education and income gave both correct and vague/incorrect responses more often, and were less likely to say they do not know what kidney disease is.

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□ Those who had diabetes and/or hypertension were slightly more likely to be able to define kidney disease correctly but this difference was not large; however, diabetes and patients with hypertension did give vague or incorrect responses.

When asked whether there is anything that would let a person know that they had kidney disease, about two-thirds of respondents (64%) incorrectly indicated that the disease does have symptoms (Question 15a). Only 13% definitively indicated that the disease has no symptoms and 22% said they were not sure.

□ Somewhat surprisingly, those in the lowest education and income categories were less likely than more-educated and higher-income respondents to believe that a person would know if they had kidney disease. Also surprising is the fact those who were tested for kidney disease, aware of a family history of kidney failure or able to give an accurate definition of the disease were more likely to say that there are ways to know if one has kidney disease.

When asked to say what would let a person know they had kidney disease, the most common responses were symptoms such as difficulty urinating (38%), general pain (33%) and frequent urination (27%). A few respondents also mentioned more accurate ways of detecting kidney disease—getting tested (6%) or learning this from the doctor (3%). Although people who had diabetes and/or hypertension were less likely to mention some of these symptoms, they were more likely to mention two others—frequent urination and protein in urine (Question 15b).

Nearly half of the sample (48%) was unable to name any causes of kidney disease when this question was asked in an open-ended way (Question 16). Only 16% named diabetes, 14% named hypertension and 3% mentioned genetics or family risk. Other common responses were poor diet (9%) and consumption of soda or pop (8%). While there was some subgroup variation in these responses, the overall awareness of the causes of kidney disease was low in all segments of the sample.

□ Patients with diabetes and/or hypertension were somewhat more likely to associate kidney disease with these two conditions and were less likely to give incorrect or inaccurate response. However, only a little over one-third of patients with diabetes (36%) named diabetes and 13% of patients with hypertension identified hypertension as a cause of kidney disease. Those who had been tested and those who understood what kidney disease is were also somewhat more likely to mention diabetes and hypertension as causes of kidney disease.

Respondents were also specifically asked whether they are aware that diabetes and hypertension are leading causes of kidney disease (Question 16a & 16b, respectively). About half (52%) of respondents said that they are aware that diabetes causes kidney disease and about one-third (36%) said the same for hypertension.

□ Awareness of diabetes as a cause of kidney disease was impacted by age of respondent as well as risk status, test status and knowledge of kidney disease. Awareness increased with age and exposure to risks or tests, as well as with education level.

Respondents were also asked to say who they believed to be at higher risk for kidney disease (Question 15). About a fifth (18%) mentioned that African Americans are at higher risk; 14% mentioned patients with diabetes; and 12% mentioned patients with hypertension. About one

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in six respondents (16%) gave responses related to consumption of certain foods and beverages (16%), 8% said that either men or women are at higher risk, 6% said older people are at higher risk and 12% mentioned some other (unlisted) factor. Close to one-third (29%) said they did not know who is at higher risk for kidney disease.

□ Women were more likely than men to identify diabetes as a risk factor, while men were more likely to mention risks associated with eating or drinking certain foods or beverages. Identification of diabetes and hypertension of risk factors was also related to income level.

□ Those who had diabetes, hypertension or a family history of kidney failure, those who knew what kidney disease is, and those who had been tested for kidney disease were more likely to mention diabetes and hypertension as risk factors.

□ Those who had a family history of kidney failure were also more likely to mention African-American race as a factor. They also mentioned genetic risks twice as often as others but the overall frequency of this response was still small (4% vs. 2%).

As mentioned above, the free recall of family history of kidney failure as a risk factor was quite low. When asked specifically how much having a relative with kidney failure increases a person’s risk for kidney disease, 29% said “a great deal”, 42% said “somewhat”, 17% said “a little” and 13% said “not at all” (Question 24c). The remaining 12% said they did not know the answer.

□ Women, those who were at risk for kidney disease, those who had been tested for kidney disease, and those who could correctly define kidney disease were more likely to say that a family history of kidney failure affects a person’s risk for kidney disease a great deal. Those with more education were less likely to say that this factor does not affect one’s risk at all.

3. Prevalence of Risk Factors

The prevalence of diabetes in the sample was 13% and that of hypertension was 34% (Question 6 & 10, respectively). These self-reported statistics from seven pilot and control communities match national prevalence estimates of these illnesses for African Americans (13% for diabetes and 35% for hypertension).

□ The prevalence of diabetes was 1.5 times higher among women than among men. It was 2.5 times higher among those in the lowest income bracket of less than $20K compared with those who had greater incomes. Similarly, those with the least education reported the highest prevalence of diabetes.

□ The prevalence of hypertension was also related to income and education, and, to a lesser degree, to gender of respondents.

□ There was significant overlap in these two conditions. Two-thirds of adults with diabetes also had hypertension and about a quarter of adults with hypertension had diabetes.

Family history of kidney failure was ascertained through a series of questions asking respondents if they knew anyone with kidney failure, whether this person was a friend/co-worker or relative, and (if they mentioned a relative) what relationship they had with the person who had kidney failure (Questions 24, 24a & 24b, respectively). Two-thirds of the sample said they knew someone with kidney failure. About half of these said this person was a relative, and about a quarter of that population mentioned a close relative (a parent, sibling,

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grandparent or child). Overall, 11% of the sample was identified as having a close blood relative with kidney failure.

4. Experience with Diabetes

Virtually all respondents said it is very (85%) or somewhat (6%) likely that someone who did not take care of their diabetes would suffer serious negative effects on their health (Question 3). The proportion of people who said this is very likely was slightly greater among those with more income and education.

When asked to name negative health consequences of uncontrolled diabetes, respondents mentioned amputation (40%) and blindness (36%) most often (Question 4). Only 17% named kidney disease. About 18% said they did not know of any negative health consequences.

□ Women named blindness and kidney disease more frequently than men. Men were also more likely to say they did not know any negative consequences of uncontrolled diabetes (24% of men and 18% of women gave this response).

□ Respondents with higher income and those with more education, and those with risk factors, named more negative consequences. They also tended to name kidney disease more often.

□ Older respondents were more likely to mention heart attacks.

When asked what kinds of tests persons with diabetes should have regularly, 76% mentioned blood tests of some kind (with 60% specifically mentioning a daily blood glucose test and 3% specifying the HbA1c test), 6% mentioned a urine test (with only a handful of respondents identifying any specific urine tests or indices), 2% said eye exams and 1% mentioned foot exams (Question 5).

□ Women, older people, those with more income, those with more education, those with diabetes and those who knew what kidney disease is, were more likely to mention a general blood test and/or specify daily blood glucose monitoring. There was some variation in mention of urine tests and/or Hemoglobin A1c tests but the differences were sporadic and no clear pattern emerged.

Respondents who had diabetes (n=269) were asked what steps they have taken to manage their diabetes. In response, 74% mentioned lifestyle changes including diet changes (70%), exercise (36%) and weight loss (7%). About the same number (73%) mentioned medication, including prescription medication (55%) or insulin (23%). Only 3% said they were doing nothing at all to manage their diabetes (Question 6a).

□ In general, younger respondents were more likely than older respondents to mention lifestyle changes and older respondents were more likely to mention medication. Those with higher incomes, those with more education, and those who had been tested for kidney disease were more likely to mention both medication and lifestyle changes.

When asked to rate their compliance with their health care provider’s recommendations for managing diabetes on a 10-point scale, the patients with diabetes in this sample gave themselves a mean rating of 7.5 (Question 6b).

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□ Older people and those who had been tested gave themselves slightly better compliance ratings than younger people and those who had not been tested.

5. Experience with Hypertension

Nearly all respondents indicated that it was very (87%) or somewhat likely (7%) that a person would suffer negative health effects if their hypertension were uncontrolled (Question 7). The subgroup variation on this item was quite small, although there were some statistically reliable differences.

The most frequently mentioned negative consequences of uncontrolled hypertension were stroke (64%) and heart attack (47%). Premature death (18%), kidney disease (8%) and amputation/limb loss (2%) were also mentioned (Question 8). About one in 10 respondents (11%) could not identify any negative consequences of uncontrolled hypertension.

□ Women, older people, those with more income, those with more education, and adults with diabetes and/or hypertension identified more negative consequences or were less likely to say they did not know any negative consequences of uncontrolled hypertension.

□ Respondents who had hypertension were also more likely to mention kidney disease, but this proportion was still small (10% vs. 6% for those who did not have hypertension).

□ Those who had been tested for kidney disease were also more likely to mention kidney disease (11%) than those not tested (6%).

When asked what tests a person with hypertension should have regularly, three-quarters mentioned blood pressure testing, and about 12% mentioned a general blood test (Question 9). Only 2% mentioned urine tests with very few respondents mentioning any specific tests for kidney disease. Nearly a fifth (18%) said they did not know of any tests.

□ Following the general pattern seen before, women, those with more income and those with more education were more likely to mention regular blood pressure tests and less likely to say they did not know of any tests that patients with hypertension should have regularly. Knowledge of tests was also related to having hypertension and/or diabetes, and knowing the definition of kidney disease. Across all groups, however, the mention of tests other than blood pressure monitoring was quite low.

The respondents who had hypertension (n=690) were asked what steps they have taken to manage this condition (Question 10a). More than three-quarters (78%) mentioned medication (76%) and/or regular monitoring (5%) and about half (54%) mentioned lifestyle changes including dietary changes (48%), exercise (26%) and weight loss (3%). Almost one in 10 (8%) said that they were doing nothing to control their hypertension.

□ As among those who had diabetes, older patients with hypertension were more likely to mention medication while younger respondents were more likely to mention lifestyle changes. Lifestyle changes were also more commonly reported among those with higher income and those with higher education.

□ Patients with hypertension who also had diabetes were less likely to report that they exercise regularly to control their hypertension.

The patients with hypertension who responded to this survey rated their compliance with their health care provider’s recommendations for managing their hypertension at 8.2 on a 10-

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point scale (Question 10b). Older respondents gave themselves a higher rating as did those who had been tested for kidney disease.

6. Perception of Personal Risk for Kidney Disease

When asked to rate their own risk for kidney disease, 15% of respondents rated their risk as higher than average, 32% said it was lower than average, and 46% thought it was average (Question 17). About 8% said they did not know their risk level.

□ Older people were more likely to regard themselves at higher risk. People in the lower income and education categories also leaned towards high- or average-risk ratings and tended to give themselves low-risk ratings less often.

□ Respondents’ self-ratings were related to their actual risk status. About a quarter of those who had any of the risk factors for CKD (26%) rated themselves at high risk, compared to 8% of those who were not at risk. On the other hand, an almost equal proportion of high-risk respondents (22%) rated their risk as lower-than-average, with the rest (about half) saying their risk is about average.

□ Among high-risk people, those with diabetes were most likely to place themselves in the high-risk category. About two-fifths of them (42%) identified themselves as having higher-than-average risk compared to a quarter of patients with hypertension and 19% of those with a family history of kidney failure.

Respondents were asked to give reasons for their personal risk ratings (Question 18). The three most common categories of responses were those related to general lifestyle or weight-management issues (24%), those related to the respondent’s disease status and/or disease management (20%), and those related to their family’s health (general health or presence or absence of specific conditions). A tenth of respondents gave reasons related to consumption of water or soda/pop; 6% mentioned presence or absence of symptoms; and 3% mentioned taking their medications. About a fifth (20%) gave some other (unlisted) reason and 16% said they did not know why they had assigned themselves to a particular risk category.

□ Older respondents were more likely to give responses related to their disease status and less likely to base their risk rating on their family’s health.

□ Those with diabetes and hypertension were several times more likely than those who did not have these illnesses to mention disease-related factors as well as family health-related factors. Those with a family history of kidney failure were more likely to mention that factor, but no more likely than others to mention disease-related factors. Those with any of the risk factors were less likely to estimate their risk based on general lifestyle and weight-related factors.

□ Those who understood what kidney disease is and those who had been tested for it were also more likely to estimate risk based on disease status. Those who had not been tested were more likely to cite family health-related factors.

Those who said their risk for kidney disease is higher than average (n=297) most often mentioned the fact that they had hypertension (33%) and/or diabetes (31%). About a fifth (22%) of those who gave themselves a higher-than-average rating mentioned family history of kidney disease as a factor affecting their risk, and 10% mentioned the fact that they are African American.

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□ In general, younger people tended to mention family history more often while older people tended to mention diabetes or hypertension (probably because of the greater prevalence of these illnesses in the higher age groups).

□ Those with risk factors for CKD were more likely to attribute risk to diabetes, hypertension or race than those not at risk, and somewhat less likely to attribute it to their family’s health status.

Those who said their risk for kidney disease is lower than average (n=635) most often mentioned general lifestyle factors such as the fact that they have a healthy diet (34%), exercise regularly (23%) and drink lots of water (15%). About a tenth of this group mentioned the fact that they did not have a family history of kidney disease (12%) or that they have a generally healthy family (10%). Fewer gave disease-related reasons, i.e. that their hypertension or diabetes is controlled (8% and 4% respectively). More than a quarter (27%) gave some other (unlisted) reason, and 9% said they thought they are at low risk because they had no reason to think they are at high risk.

□ Younger respondents and those in the higher educational categories were more likely to attribute their low risk to exercise, diet or to the fact that they had no reason to think that they are at high risk.

□ Those who had risk factors for CKD were more likely to attribute lower risk to well-controlled hypertension, well-controlled diabetes, or to the fact that they take their medication regularly.

About half the sample (n=930) said their risk is average. More than a quarter (28%) gave reasons related to weight or lifestyle factors, about a fifth (19%) gave some disease-related response, a similar proportion (20%) said they did not know why their risk is average, and 17% mentioned their family’s health (or lack of health) in this regard.

□ Respondents at the pilot sites were more likely than those at the control sites to give a disease-related response on this question (21% vs. 13%).

□ Those who had risk factors were more likely to give disease-related responses.

7. Screening and Prevention of Kidney Disease

When asked what tests can be used to detect kidney disease, 58% of respondents did not know or did not answer the question (Question 21). Most of those who answered gave relatively vague responses—“blood test” (24%) and “urine test” (23%).

□ People who had been diagnosed with diabetes, those who had a family history of kidney failure, those who had been tested for kidney disease, and those who could correctly describe what kidney disease is were more likely to give a more specific response (such as serum creatinine, urine protein, etc.) but these numbers were still low and no more than 7% of any sub-group mentioned a specific test or indicator for kidney disease.

A little more than one-third of respondents (36%) reported that they had been tested for kidney disease (Question 13b).

□ Men were more likely than women to be tested (42% vs. 33%), as were older respondents. People at the highest and lowest ends of the education scale were somewhat more likely to have been tested than those in the middle ranges.

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□ People with diabetes and hypertension were more likely to have been tested. However, those with a family history of kidney failure were no more likely than others to have been tested.

When asked to rate the preventability of kidney disease on a 10-point scale, a little more than

one-tenth (12%) of the sample said they did not know (Question 19). For those who responded, the mean scale rating was 6.8.

□ People with higher incomes and those with more education gave higher-scale ratings than those with lower incomes and education, indicating a greater belief that kidney disease is preventable.

Similarly, when asked to say how treatable kidney disease is, about a tenth (9%) of the sample said they did not know (Question 20). For those who responded, the mean scale rating on a 10-point scale was 7.5. This rating suggests that people had greater faith in treatment of kidney disease than in its prevention.

□ The perception that kidney disease is treatable increased with age of respondent. On the other hand, people with a high school education or less were less likely than others to see kidney disease as a treatable illness.

Despite strong beliefs that kidney disease is both preventable and treatable, relatively few people could name specific ways to prevent the illness or stop its progression (Question 22). One-third of respondents could mention no ways of preventing or treating kidney disease. Only a tenth mentioned controlling diabetes and 12% mentioned controlling hypertension. The most common responses to this question were general healthy practices such as having a healthy diet (34%) and drinking lots of water (27%), followed by exercising regularly (15%).

□ Diet and exercise were mentioned most often by the youngest respondents (30-34 years) and their salience declined with age. These two behaviors were also mentioned less often by lower income and education groups.

□ At-risk respondents, those who had been tested, and those who could correctly define kidney disease were somewhat more likely to mention specific kidney-disease prevention and treatment behaviors such as controlling diabetes and hypertension, and taking prescription medication, but no more than a fifth of any subgroup mentioned these ways of preventing CKD or slowing its progression.

8. Patients with Kidney Disease

Twenty-two respondents, or 1.1% of the sample population, indicated they had kidney disease (Question 13). The majority of these self-reported CKD patients (19 individuals) said a doctor or a health care provider told them they had kidney disease, and most (18) said they had been tested for kidney disease (Question 13a).

When asked how they are being treated for their kidney disease, eight reported they were

using medication, six said hemodialysis/dialysis at a center, three said they had made general dietary changes, 10 said they were treating it using other means, and two individuals said they did not know and/or did not remember how their illness is being treated (Question 13d).

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When asked to rate their level of compliance with their health care provider’s recommendations for treating kidney disease, most respondents (18 of 22) said they followed their provider’s recommendations fairly well, giving themselves scale ratings of 8 (4 people), 9 (3 people) or 10 (11 people) on a 10-point scale (Question 13e). Two individuals rated themselves at 3 and two gave themselves a rating of 5.

9. Communicating about Kidney Disease

Relatively few respondents (23%) reported that they had discussed kidney disease with someone in the past year (Question 23).

□ Past-year discussions occurred more often among persons with more education, those who had been tested for the disease, those at risk for CKD (particularly, those with diabetes or a family history of kidney failure), and those who understood what kidney disease is. Women were also more likely to say they had discussed kidney disease in the past year than were men.

Among those who reported having a conversation about kidney disease in the past year, the largest proportion (39%) said they had had a conversation with a doctor (Question 23a). This corresponds to 9% of the total sample. In addition, about 7% of the total sample reported having a conversation with a friend or relative, 5% specifically said they had talked with a friend or relative with kidney disease or kidney failure, and about 2% said they talked with a friend or relative who has diabetes or hypertension.

The people who had discussed kidney disease with their doctor were then asked what their doctor had told them during that discussion (Question 23b). The most common advice/information mentioned by this small sample was as follows: to be tested regularly (31 respondents), that they should control diabetes to prevent or control kidney disease (29 respondents), that they should control hypertension to prevent/control kidney disease (27 respondents), that they are at risk (21 respondents), or that they need a change in their medication (12 respondents). Another 83 respondents gave some other (unlisted) response.

Fourteen percent of all respondents reported that they had encouraged someone else to be tested for kidney disease (Question 26).11 Of these, 8% said they had given this advice to a friend and 5% said they had advised a friend or coworker, and 2% mentioned someone else (Question 26a). Of the 162 respondents that mentioned that they had given this advice to a relative, about one-third (31%) said they gave this advice to their child, 28% mentioned a parent and 21% a sibling, with the remainder mentioning a non-blood relative or more distant relative.

□ Women were more likely than men to say they had encouraged someone to get tested for kidney disease, as were people 65 and older.

□ Persons who had a family history of CKD were twice as likely as those who did not to have encouraged someone to be tested (25% vs. 13%). Those who had been tested for CKD were also much more likely to encourage others (23% vs. 9%).

11 This figure might over-estimate the true number, as some might be giving the “socially desirable” answer.

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10. Exposure to Information about Kidney Disease

Less than one-third (29%) of respondents recalled seeing, hearing or reading any information on kidney disease in the past year (Question 27).

□ Exposure to information was related to respondents’ age, with a greater proportion of older people reporting exposure to information. Exposure was also modestly related to respondents’ income and education.

□ Those who had any or all of the risk factors for kidney disease were more likely to have been exposed to information on kidney disease; 35% of patients with diabetes, 31% of patients with hypertension and 37% of those with a family history of kidney disease reported seeing, hearing or reading information on kidney disease in the past year. Similarly, those who had been tested for kidney disease and those who could correctly define it were more likely to say they had seen, heard or read information on this topic in the past year.

Those who reported exposure to kidney disease-related information were asked to say where their exposure had occurred (Question 27a). Doctor’s office was the most common response to this question, with about two in five (37%) of those who had been exposed to information mentioning this source. About a quarter of those who had been exposed mentioned newspapers or magazines, 16% mentioned brochures, 8% mentioned TV, 6% the Internet, 5% a dialysis clinic and 3% an education class. About a fifth (18%) gave an “other” (unlisted) response to this question.

□ More men than women named TV as a source. Those with less income also mentioned TV more frequently. Among those with less than a college education, both TV and brochures were mentioned more frequently than by those with a college education or more.

□ Older patients mentioned newspapers and magazines more often than younger patients. Almost one-third of those 55 and older (31%) named this source, almost as many as those that mentioned doctors’ offices.

Less than one-third (29%) of those who reported seeing or hearing something about kidney disease in the past year said they had actively sought out this information (Question 27b).

□ Women and college graduates, those with risk factors, those who had been tested for kidney disease, and those who understood what kidney disease is were more likely to say they had actively sought information on kidney disease.

Fourteen percent of respondents indicated that they had heard or read the NKDEP campaign message: You have the power to prevent kidney disease (Question 27c). This erroneous recall was nearly identical in the pilot and control communities.

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DETAILED DISCUSSION OF FINDINGS

1. Awareness of CKD

General Health Problems Affecting African Americans: Top of mind mention of CKD as a health problem

Q2: In your opinion, what are the three most serious health problems facing African Americans today?

Hypertension or high blood pressure, named by 61% of respondents, was the most frequently mentioned health problem. Diabetes and heart disease rounded out the top three, named by 55% and 45% of respondents, respectively. Just 3% of respondents named kidney disease, ranking eighth among the total sample. It is interesting to note that while there were several differences in frequency and rank of response by demographic and medical sub-groups, mention of kidney disease was relatively flat throughout all sub-samples.

Top Health Problems Facing African Americans Today (Percent, Multiple Responses Permitted)

Hypertension/high blood pressure 61Diabetes/sugar/sugar diabetes 55Heart disease/stroke/heart attack 45Cancer 35AIDS/HIV 26Obesity/overweight 7Kidney disease/kidney failure/End Stage Renal Disease

3

Lack of insurance 2Access to healthcare 1Accidents 1Poverty 1Violence 1Other 19Don’t know/Don’t remember 9

Sub-group Differences

Gender

Approximately two-thirds of women said hypertension (64%) or diabetes (59%) is a chief health concern, compared to just one-half of men who gave the same responses (54% and 43%, respectively).

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Age

Younger respondents were more likely than their older counterparts to indicate that AIDS/HIV, cancer or diabetes are top health concerns for African Americans. Thirty-six percent of those less than 35 years of age mentioned AIDS or HIV, compared to just 13% of those over the age of 65. Similarly, 37% of 30 to 34 year-olds believed cancer was a top health problem, and just 28% of seniors concurred. The proportion of 30-34 year-olds who mentioned diabetes was 59% (compared to 51% of the eldest respondent group).

Diabetes was the most frequent health problem named by the youngest age group. Fifty-nine percent of respondents under 35 years-old listed diabetes, while 49% of that age group identified hypertension, the most common response for the total sample.

More than half of those over 64 years-old (56%) believed heart disease to be a serious health problem for African Americans. In contrast, just one-third of 35 to 44 year-olds (34%) gave the same response.

Mention of hypertension was higher among those between the ages of 35 to 54. Approximately two-thirds of those 35 to 54 (66%) claimed hypertension is a top health problem for African Americans, compared to about one-half (49%) for those under 35 years, and 54% for those 65 and older.

Income

In general, respondents with higher incomes were more likely to list hypertension as a top health concern for African Americans. About half (56%) of respondents in households earning less than $20K annually mentioned hypertension, while two-thirds (69%) of those with annual household incomes of $80K or higher gave that response.

The proportion of people that mentioned diabetes also varied by income level, but there was no consistent pattern in this variation. One-half of respondents making less than $20K (51%) and those making $40K to $59K (50%) annually said diabetes is a top health concern. However, about six in 10 (between 59% and 61%) of respondents from all other income brackets made the same claim.

The proportion of respondents that mentioned HIV/AIDS as a top health concern was highest (33%) in the middle-income group of $40K to $59K, but fell to about 20% for the highest and lowest income groups.

Education

Highly educated respondents were more likely to mention hypertension and diabetes as top health concerns than those with less education. About two-thirds of those with some graduate schooling or a graduate degree mentioned hypertension (64%) or diabetes (62%), whereas about one-half of those with a high school diploma or less gave the same responses (56% and 46%, respectively).

Those with less education seemed to mention cancer more often. Four in 10 respondents with a high school education or less (40%) mentioned cancer as a primary health concern for African Americans, higher than college graduates (31%) and those with a graduate education (29%).

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Location

There were no significant differences between the pilot and control sites on this item. However, there was some variation among the pilot sites:

□ More Atlanta residents (37%) mentioned AIDS/HIV than any other pilot site or the control group. In contrast, just 16% of respondents in Jackson mentioned AIDS/HIV.

□ Nearly six in 10 Jackson respondents (59%) said diabetes is a chief health concern compared to about half (52%) of Baltimore and Atlanta residents.

□ Jackson residents (51%) mentioned heart disease more often than did respondents from all other cities, especially Cleveland (39%).

□ Fewer Baltimore residents (56%) believed hypertension is a top health problem for African Americans compared to the other pilot sites (64%).

Risk Status

Respondents who were at risk for kidney disease were more likely to list hypertension (64%), diabetes (61%) and/or heart disease (48%) than those not at risk (58%, 49% and 42%, respectively).

They were less likely to mention AIDS/HIV and cancer. About a fifth (20%) of at-risk respondents mentioned AIDS/HIV compared with 31% of those not at risk. Similarly, 31% of at-risk respondents said cancer is a top health problem, but nearly four in 10 (39%) of those not at risk cited cancer.

Diabetes was the top ranked response for those who had diabetes. Over three-fourths of patients with diabetes (78%) mentioned diabetes as a top health concern, in contrast to just 51% of those not diagnosed with diabetes. Similarly, 67% of patients with hypertension cited this health problem as a top health concern for African Americans, while fewer (57%) of those who do not have hypertension gave that response.

Fewer patients with hypertension or diabetes mentioned AIDS/HIV (10% and 17% respectively) than did respondents not diagnosed with either problem (28% and 30% respectively). The same pattern held true for cancer responses among these groups.

Respondents with a family history of kidney failure mentioned diabetes more frequently (66%) and hypertension/high blood pressure less frequently (55%) than those with no family history of the illness, of whom 53% named diabetes and 62% listed hypertension.

Test Status

Those who had been tested for kidney disease were a little less likely to mention cancer and HIV/AIDS as top health problems, but these differences were not large (32% vs. 37% for cancer and 22% vs. 28% for HIV/AIDS).

Knowledge of CKD Definition

Respondents who knew that kidney disease is a reduction in kidney function were more likely to mention diabetes (58%) and/or heart disease (50%) as key health problems for African Americans. Those who do not understand kidney disease had lower frequencies of response for both diabetes (51%) and heart disease (40%).

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Awareness of CKD as an Outcome of Diabetes and/or Hypertension

Diabetes

Q4: As you may know, many African Americans have diabetes or sugar diabetes. If a person does not take care of their diabetes, do you have any idea of what the negative effects might be?

While approximately four in 10 respondents were able to name several consequences from loss of a limb (40%) to blindness (36%), just 17% mentioned kidney disease in this regard. Awareness of kidney disease as a negative health consequence of uncontrolled diabetes varied by age, education, gender, location as well as risk for CKD, experience with diabetes or hypertension, and knowledge of CKD definition.


Gender

About a fifth of the women surveyed (19%) recognized kidney disease as a probable outcome of diabetes, compared to 12% of men.

Age

Mention of kidney disease tended to increase with age of respondent, although this pattern was not entirely consistent. Fifteen percent of respondents 30 to 34 years old mentioned kidney disease as a consequence of not treating diabetes, while one-fifth of respondents over 64 years of age (21%) gave that response.

Education

Nearly twice as many respondents with at least some graduate schooling mentioned kidney disease as a consequence of uncontrolled diabetes (23%) than did those with a high school diploma or less (13%).

Location

The difference between the pilot and control sites on this question was not significant. Among the pilot sites, more respondents in Jackson (23%) and Baltimore (19%) identified kidney disease as a consequence of not treating one’s diabetes than did Atlanta and Cleveland residents (14% and 16% respectively).

Risk Status

One-quarter of at-risk respondents (24%) identified kidney disease as a possible outcome of diabetes, compared to 12% of those not at risk.

About one-quarter of patients with diabetes (29%) and patients with hypertension (22%) mentioned kidney disease as a negative health outcome of uncontrolled diabetes compared with 15% of those not diagnosed with diabetes or hypertension.

More respondents with a history of kidney failure in the family identified kidney disease (32%) as a possible outcome compared to 15% of respondents with no such family history.

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One in five respondents who correctly identified kidney disease as stoppage or reduction in kidney function (21%) recognized CKD as a possible outcome of untreated diabetes, while only 13% of those unclear about CKD also mentioned kidney disease.

Hypertension

Q8: As you may know, many African Americans also have high blood pressure or hypertension. If a person does not take care of their high blood pressure, do you have any idea of what the negative effects might be?

Stroke was the most common response to this question, garnering 64% of responses, followed by heart attack among 47% of the sample. Again, kidney disease was recognized by very few respondents as a potential consequence of leaving hypertension untreated (8% of the total sample). Location, respondents’ test status, and hypertension patient status affected the frequency of mention of kidney disease for this question.


Location

There was no difference on this question between pilot and control sites. Among the pilot sites, respondents residing in Jackson identified kidney disease as an outcome for untreated hypertension more frequently than those in Atlanta and Baltimore (11% vs. 6%).

Risk Status

Slightly more respondents diagnosed with hypertension (10%) referred to kidney disease as a possible outcome if their condition went untreated than did those who did not have hypertension (6%).

Test Status

One in 10 respondents tested for kidney disease (11%) mentioned it as a negative effect of leaving hypertension untreated, and only 6% of respondents who had not been tested for CKD gave the same response.

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Aided Awareness of CKD

Q11: Have you ever heard of an illness called kidney disease?

Nearly all respondents (90%) were aware of the illness. Gender, age, household income level, diabetes patient status and knowledge of CKD definition impacted levels of awareness. There were no differences on this item between the pilot and control communities.


Gender

More women (92%) were aware of kidney disease than men (85%).

Age

More respondents between the ages of 45 and 54 were aware of kidney disease (93%) than those aged 35 to 44 (87%).

Income

Eight in 10 (83%) respondents whose households earn between $60K and $80K were aware of kidney disease, compared to approximately 90% of those in lower income brackets.

Risk StatusMore patients with diabetes (94%) were aware of kidney disease than those who have not been diagnosed with diabetes (89%).

Knowledge of CKD DefinitionNinety-four percent of those who could correctly define kidney disease claimed to be aware of the illness, compared to 86% of those who did not understand the disease.

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Perceived Commonness of CKD

Q25: How common do you think kidney disease is? Would you say it is very common, somewhat common, not common or very rare?

Most people (93%) thought kidney disease was somewhat (51%) or very common (43%). This number was fairly consistent across most demographic categories, with some small variations in the proportion of people who regarded it as very common.


GenderMore women than men regarded kidney disease as very common (46% vs. 33%).

IncomeThe proportion of people who regarded kidney disease as very common ranged from 25% in the highest income category ($100K+) to 50% in the $20K to $39.9K category, but no clear pattern emerged.

EducationThe proportion of people who regarded kidney disease as very common was greatest in the lowest education category (less than high school, 57%) and lowest in the highest education category (graduate degree, 33%), with most of the middle categories converging around the overall mean.

LocationThere was a slight difference between the pilot sites and the control sites on this question, with 48% of the people in the control sites reporting that kidney disease is very common compared with 41% of those in the pilot sites. Among the pilot sites, more respondents in Jackson said that kidney disease is very common (51%) than in Atlanta (39%).

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2. Knowledge of CKD

Knowledge of the Definition of Kidney Disease

Q12: Can you tell me what you think kidney disease is?

The table below shows all the responses given for this question aggregated into key response categories. It shows that only about half the respondents were correctly able to define what kidney disease is. The others gave vague or incorrect responses to this question or were not able to give a response, indicating that the African-American public’s knowledge of this condition is inaccurate or incomplete. In response to this question, a small proportion mentioned causes or risk factors for kidney disease, or the fact that it leads to dialysis, kidney failure or death.

Responses varied by gender, location, age, income and education as well as several medical categories, details of which are described below. To a certain degree, those with experience with diabetes or hypertension seemed to have a heightened understanding of kidney disease, but even these sub-samples did not exhibit a solid grasp of the illness.

Descriptions and Definitions of Kidney Disease (Percent, Multiple Responses Allowed)

Stoppage/Reduction in Function 49Stoppage: Kidneys stop working 25Unspecific reduction: Functioning is reduced/Don’t work as well as they should

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Specific reduction: Inability to filter blood of waste, water and/or chemicals

13

Vague/Incorrect Definitions 30General disease or ailment of the kidneys 25An infection of the kidneys 6Kidney stones 1A type of cancer 1

Mention of dialysis/ESRD 8Ultimately/eventually leads to kidney failure/dialysis/kidney transplant

4

If not treated leads to kidney failure/dialysis/kidney transplant 3Immediate need for dialysis or a kidney transplant 2

Mention of Causes or Risk Factors 7Diabetes causes 5Hypertension/high blood pressure causes 4Family members of people with kidney failure/kidney disease at risk

1

Other specific race (not African American) at risk/happens to other race

-

Mention of symptoms of some kind (e.g. urinating too much or too little)

2

Deadly illness/something that kills you 1Don’t know/Don’t remember 21

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Gender

In general women appeared more knowledgeable about kidney disease than men. A little over half of the women in the sample (52%) mentioned stoppage or reduction in kidney function, while 44% of men gave that response. In addition, women identified the potential for kidney transplant and/or dialysis more frequently than men (10% compared to 4%). Lastly, more men were unable to explain kidney disease at all; 26% said they don’t know what it is, compared to 19% of women.

Age

Younger respondents were more likely to give both correct and incorrect/vague definitions of CKD. More than one-half of this same young age group (55%) indicated kidney disease is the reduction of stoppage of kidney function, compared to around 50% of the middle age groups and 36% of those 65 and over. On the other hand, over one-third of respondents ages 30 and 34 (36%) offered a vague or incorrect description of kidney disease, compared to 27% of those over 54 years of age. People in the 65+ age category were more likely than those in the other groups to say that they did not know or did not remember what kidney disease is (29% vs. 20% for all the other age categories combined).

In contrast, older respondents were more cognizant of risk factors associated with kidney disease—especially diabetes— than were younger respondents. Almost one-fifth of respondents over 54 years of age (18%) named relevant causes of kidney disease (and 16% named diabetes). Only two percent of those between the ages of 30 and 34 named any causes for kidney disease (1% said diabetes). This may be due to a higher prevalence of diabetes among the older respondents.

Mention of dialysis or kidney transplant peaked at ages 45 to 54, exhibiting a U-shaped trend. Twelve percent of respondents between the ages of 45 and 54 gave comments related to ESRD, and just 7% of those over 54 years and 7% of respondents 35 to 44 years-old described kidney disease in the same manner.

Income

Higher household income groups gave more descriptions of kidney disease than lower-income household respondents. One-third of those making less than $20K (32%) said they did not know or did not remember what kidney disease is, compared with only 16% of those earning $60K or more annually.

Similar to the trend by age, higher income earners offered both correct and incorrect descriptions more often. One-third of respondents earning $60K or more (35%) gave vague or incorrect responses compared to just 20% of those making less than $20K annually. And over half (54%) of the high-wage earners mentioned kidney function stoppage or reduction while about four in 10 of the lowest income group (41%) gave the same description.

Education

Higher-educated respondents identified kidney disease as a stoppage or reduction in kidney function more often. Six in 10 of respondents with a four-year college degree or more schooling (60%) gave that response, more than those with some college or a two-year degree (50%) and those with a high school diploma or less (37%).

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Those with a high school education or less were also more likely to say they did not know what kidney disease is. One-third of this group (31%) did not know how to describe kidney disease compared with just 19% of those with some college or an Associate’s degree and 13% of respondents with a four-year college degree or more.

Once again, while higher education groups were more likely to give a response, they were also more likely to give vague or incorrect responses. About a fifth (22%) of respondents with a high school diploma or less education gave vague or incorrect definitions of kidney disease compared with one-third (33%) of those in other education categories.

Location

Respondents in the pilot locations were as likely as those in the control sites to describe kidney disease with some reference to a stoppage or reduction in kidney function. However, more respondents in the control locations were unable to describe kidney disease than those in the pilot site. Twenty-eight percent of control location respondents said they don’t know what the disease is, and just 20% of pilot location respondents gave the same response.

There were no significant differences by location in the frequency of mention of the incorrect or vague (infections, stones, cancer or general ailments of the kidney) responses. However, twice as many respondents in the pilot site locations (8%) mentioned primary risk factors for CKD—namely diabetes and hypertension—in response to this question than did the control site respondents (4%).

Risk Status

Respondents at risk for CKD were somewhat less likely to give vague or incorrect definitions of kidney disease than those not at risk (26% vs. 34%). They were also more likely than those not at risk to mention risk factors for kidney disease, although the overall proportion that mentioned risk factors in response to this question was still low. One in 10 respondents at risk for kidney disease (11%) identified medical risk factors associated with the disease, compared with 4% of those not at risk. Specifically, among those at risk, 7% named diabetes and 6% mentioned hypertension as possible causes for the disease, while just half as many respondents at risk mentioned these causes (3% named diabetes and 2% named hypertension).

Patients with DiabetesNot surprisingly, patients with diabetes were more knowledgeable about kidney disease than those not diagnosed. This apparent knowledge was shown in the higher frequency of accurate descriptions and the lower frequency of don’t know or vague responses given by this group as described below.

The frequency of patients with diabetes that correctly identified kidney disease as a stoppage/reduction in kidney function was only slightly higher than those who did not have diabetes (54% vs. 49%). Patients with diabetes were also less likely to give vague or incorrect responses; less than a quarter of patients with diabetes (23%) gave such a response compared with about one-third (32%) of those not diagnosed with diabetes. Similarly, one in six respondents with diabetes (16%) said they did not know what kidney disease is, compared to about one in four (22%) respondents not diagnosed with diabetes.

Respondents with diabetes identified risk factors for kidney disease more often than those not diagnosed with the disease. Almost three times as many patients with diabetes as non-patients named possible medical causes for kidney disease (15% vs. 6%). Thirteen percent of patients

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with diabetes identified their illness as a possible risk factor for kidney disease, and just 3% of those not diagnosed with diabetes made the same connection. Likewise, one in 10 patients with diabetes also noted that hypertension could cause kidney disease compared to 3% of respondents who reported they did not have diabetes.

Sixteen percent of patients with diabetes identified a connection between kidney disease and ESRD, twice as many as respondents not diagnosed with diabetes (7%). Specifically, 8% of respondents with diabetes (and just 3% respondents who do not have diabetes) mentioned that kidney disease ultimately leads to kidney failure, and/or the need for dialysis or transplant.

Patients with Hypertension

Like patients with diabetes, those diagnosed with hypertension also appeared to be somewhat more knowledgeable about kidney disease. A quarter of patients with hypertension gave a vague or incorrect response to this question compared to about one-third (34%) of those not diagnosed.

Risk factors for kidney disease were mentioned more than three times more often by patients with hypertension (13%) than those who did not have that health problem (4%). Similarly, triple the percentage of respondents diagnosed with hypertension (7%) than those not diagnosed (2%) also indicated hypertension could cause kidney disease.

Finally, slightly more respondents with hypertension recognized that dialysis or kidney transplant or failure could result from kidney disease (11% compared to 7% of those not diagnosed with hypertension).

Family History of Kidney Failure

Nearly six in 10 respondents who have a family history of kidney failure (57%) accurately identified the ailment as a stoppage or reduction of kidney function, compared to less than half (48%) of those who have no family history of the disease. Also, fewer respondents with a family history of kidney failure than those who have no family history of the disease were unable to describe kidney disease (14% vs. 22%).

Test Status

Respondents who had been tested for kidney disease appeared slightly more knowledgeable about the disease than those who had not been tested. Respondents tested for kidney disease gave an accurate description of the disease and identified risk factors and consequences of the disease with somewhat greater frequency than those not tested.

A little over half of those tested (53%) correctly identify the illness as a stoppage or reduction of kidney function, compared to 48% of those not tested. Conversely, nearly three in 10 respondents not tested were unable to describe the disease at all (28%), compared to 23% of respondents tested for kidney disease.

The proportion of tested respondents that mentioned a medical risk factor for the disease (10%), was almost double the proportion of those who had not been tested (6%). This ratio was similar for specific mentions of diabetes (7% to 4%) and hypertension (6% to 2%) as risk factors. More than one in 10 respondents tested (11%) also made the connection between kidney disease and ESRD, compared to 7% of respondents not tested.

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Perceptions Regarding Symptoms or Signs of Kidney Disease

Perceived Existence of Symptoms

Q15a: Is there anything that would let a person know they had kidney disease?

About two-thirds of respondents (64%) incorrectly indicated that the disease does have symptoms. Only 13% definitively said that kidney disease has no symptoms, and nearly double that percentage (22%) were unsure.

The proportion of people who believed that kidney disease has some symptoms varied with income, education, family history of kidney failure, test status and knowledge of CKD.Interestingly, respondents with more than $20K annual income or more than a high school education were more likely to think there is something that would let a person know they had CKD.

Similarly, more respondents who were tested for kidney disease, aware of a family history of kidney failure or able to give an accurate definition of the disease, said there were ways to know if one has kidney disease. This conflict indicated that although their circumstances may have increased their awareness of the disease, they did not necessarily possess accurate information regarding its (lack of) symptoms.


Income

Fewer respondents earning under $20K annually (58%) than any other income group believed there was a way for a person with kidney disease to know they had the disease (58% vs. about 67% for all other income groups combined).

Education

Just over one-half of respondents with a high school education or less (53%) believed that there was something that would let a person know they had kidney disease, compared to 69% of respondents with at least a bachelor’s degree, and 70% of those with some college or a two-year degree.

Risk Status

Three-fourths of respondents with a family history of kidney failure (75%) indicated there was a way for someone to know if he/she had kidney disease, much more than those with no family history (63%).

Test Status

Seventy percent of respondents who have been tested for kidney disease said there was a way to know if one had the disease, and 61% of those not tested concurred.


Seven in 10 respondents who were able to describe kidney disease as a reduction or stoppage of kidney function (70%) said there was a way to know one had the disease. Significantly fewer

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respondents who did not describe the disease in that manner (64%) believed that kidney disease has symptoms.

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Perceived Symptoms of Kidney Disease

Q15b: How would someone know they had kidney disease?

Those who said there are symptoms for kidney disease (n=1294) specifically named difficulty urinating (38%), general pain (33%) and/or frequent urination (27%) as possible indicators. A few respondents gave more accurate ways to know one had kidney disease: getting tested (6%), or their doctor would tell them (3%).12 Only about 3% (65 respondents) gave only these two responses without also naming some other symptoms.

While there was some variation of response by age, income and education, no pattern of responses emerged. Subgroup differences were more systematic for gender, location, risk status, disease status, family history, test status and knowledge status. These are described below.


Gender

Women were more likely than men to say difficulty urinating (42% compared to 29%) or swelling/edema (14% for women and 10% for men) would constitute warning signs that one had kidney disease.

Twice as many men indicated that medical tests (10% for men, 5% for women) or doctor explanations (5% for men, 2% for women) are ways to know if a person has kidney disease.

Location

Slightly more pilot location respondents indicated that medical tests are a way to determine if a person had kidney disease. Seven percent of pilot location respondents and 3% of the control site respondents gave this response.

Risk Status

Those at risk for kidney disease were more likely to mention symptoms related to urine. One-third of at-risk respondents (32%) said frequent urination and 9% said protein in the urine were symptoms of kidney disease. Those not at risk gave those responses less often, 23% for frequent urination and 5% for protein in urine.

Patients with diabetes were less likely than others to regard general pain as a symptom but more likely to think that frequent urination would indicate kidney disease. More than one-third of respondents who do not have diabetes (35%) said that general pain would be a signal for kidney disease, compared to 16% of those with diabetes. More than four in 10 respondents who have diabetes (41%) cited frequent urination as a sign of kidney disease, while just one quarter of those not diagnosed with the ailment (25%) gave the same response.

Patients with hypertension were more likely than others to mention frequent urination and protein in the urine as symptoms. One-third of respondents with hypertension (32%) identified frequent urination as a symptom of kidney disease, and 10% suggested that protein in the urine would let

12 All reported percentages are computed off the base of people (n=1294) who responded yes when asked whether there is something that would let a person know they had kidney disease.

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them know they might have kidney disease. In contrast, 25% of those not diagnosed with hypertension listed frequent urination and 6% named protein in the urine.

Nearly one-quarter of respondents with a family history of kidney failure (23%) said that swelling or edema were signs of kidney disease, compared to only half that percentage among those with no such family history (12%). Also, one-third of respondents with no history of kidney failure in their family (34%) said general pain was a symptom. Only one-quarter (24%) of respondents with a family history of kidney failure mentioned pain.

Test Status

Slightly more respondents who had been tested for CKD said that pain would be a sign of kidney disease compared to those who had not been tested (37% vs. 30%).


Respondents able to accurately describe kidney disease were a little more likely than those who could not do so to think that this illness has some urine-related symptoms. More than four in 10 of those who defined kidney disease correctly mentioned difficulty urinating (41%) and protein in the urine (9%) as symptoms of the disease. In contrast, 36% of those who did not understand what kidney disease was also identified difficulty urinating and 4% named protein in the urine.

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Perceived Causes of Kidney Disease

Perceived Causes

Q16: Do you happen to know what can cause kidney disease?

Again, respondents lack some key information about the illness, as nearly one-half of the total sample was unable to name any causes of kidney disease (48%). As shown below, few respondents were able to identify true risk factors for the disease: only 16% named diabetes, 14% said hypertension or high blood pressure, and just 3% cited genetics/family risk as a cause.

Although some of these causes of kidney disease were mentioned more frequently among groups with some association to the disease or one of the risk factors, the vast majority of all respondents did not have a solid understanding of the causes of kidney disease. The proportion of people who mentioned genetics or family risks was uniformly low.

Perceived Causes of Kidney Disease (Percent)

Diabetes/sugar diabetes/sugar 16Hypertension/high blood pressure 14Too little water/not drinking enough 14Poor diet 9Drinking soda or pop 8Genetics/family risk/family member with kidney failure

3

Overweight/obesity 2Too much water/drinking too much 2Unspecific prescription medication 2Other over-the-counter medicine 1Lack of exercise 1Specific prescription medication *Headache medicines: Tylenol/aspirin, etc. *Poor treatment/doctor’s fault *Other 11Don’t know/Don’t remember 48* Less than 0.5%


Gender

Women appeared more knowledgeable about diabetes as a cause of kidney disease; nearly one in five women (19%) identified diabetes as a cause of the disease, and just 10% of men gave the same response.

Age

Older respondents were more likely to make the connection between diabetes and hypertension than their younger counterparts. One in five respondents 55 years old and older (20%) named

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diabetes, but only 12% of those 30 to 34 years old gave the same response. Similarly, 17% of respondents 55 years and older linked hypertension to kidney disease, and just 10% of the youngest age group did the same.

More of the younger respondents said they did not know any causes for kidney disease than did the older respondents. Among 30 to 34 year-olds, 57% were unable to name a cause, whereas less than one-half of respondents over 54 years of age (47%) said they did not know any causes of kidney disease.

Income

While mention of diabetes as a cause of kidney disease varied by income bracket, no clear pattern emerged.

The lowest income group was less likely to mention hypertension than those earning higher incomes. Just 8% of respondents earning less than $20K annually named hypertension as a cause of kidney disease. In contrast, 16% of those earning $20K to $39K, 17% of those earning $40K to $59K, and 20% of respondents earning $60K or more cited hypertension as a cause of kidney disease.

Education

Over one-half of respondents with a high school education or less (54%) were unable to name any causes for kidney disease, significantly more than those with a Bachelor’s degree or more schooling (46%).

Compared to more educated respondents, those with a high school education or less were also less likely to mention diabetes and/or hypertension as causes of kidney disease. One in 10 respondents with a high school education or less (12%) named diabetes as a cause of kidney disease, compared with 17% of those with some college or an Associate’s degree, and 20% of those with at least a Bachelor’s degree. Similarly, just 8% of high school educated respondents recognized hypertension could cause kidney disease, compared with 16% of respondents with some college and 19% of those with at least a four-year degree.

Location

There were no significant differences between pilot and control sites for any of the actual predictors of kidney disease. However, one-quarter of the control site respondents (24%) mentioned reasons relating to the under- or over-consumption of water or soda as causes of kidney disease, compared to 20% of the pilot site respondents.

Risk Status

One in five respondents at risk for kidney disease said hypertension (20%) and/or diabetes (22%) causes kidney disease. Those not at risk were less likely to make the same connections; just 11% named hypertension and 13% named diabetes as a cause of kidney disease.

Over one-half of respondents not at risk for kidney disease (54%) were unable to identify any causes for the illness, compared to 45% of those at risk.

Another commonly mentioned, though inaccurate, cause of kidney disease was water/soda consumption. One-quarter of respondents at risk (23%) indicated that drinking too much or too little water or too much soda caused kidney disease. Eighteen percent of those not at risk also gave this incorrect response.

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Patients with Diabetes and/or Hypertension

Respondents diagnosed with either diabetes or hypertension were much more cognizant that these ailments caused kidney disease. One-third of patients with diabetes (36%) and one-fifth of patients with hypertension (21%) said diabetes caused kidney disease, compared with 13% of respondents who did not have diabetes, and 15% of those who did not have hypertension. Patients with diabetes and/or hypertension were also more likely to associate hypertension with kidney disease.

More than one-half of respondents who were not diagnosed with diabetes (52%) were unable to provide any causes for kidney disease, compared with 38% of those who were not diagnosed. Similarly, patients with hypertension were also less likely than those who did not have hypertension to say they did not know or did not remember any causes of kidney disease (45% vs. 53% ).

About one-fifth of respondents not diagnosed with hypertension (22%) said extreme water or soda consumption levels caused kidney disease compared to 18% of patients with hypertension.


More than one-half of respondents who did not have a family history of kidney failure (51%) could not describe any causes for the disease, while about four in 10 respondents with a family history of kidney failure (42%) were unable to respond as well.

Test Status

About one-fifth of respondents who had been tested for kidney disease stated that diabetes (23%) causes the disease compared to 13% of those who had not been tested. Similarly, 20% of respondents tested named hypertension, compared with 12% of those not tested.

More than one-half of respondents who had not been tested for kidney disease (54%) were unable to identify any causes of kidney disease compared to 43% of those who had been tested.


Nearly twice as many of those who correctly defined kidney disease as a stoppage or reduction in kidney function named diabetes as a cause compared with those who did not understand the disease (23% vs. 11%). Consistent with this, twice as many of those who accurately described kidney disease said hypertension causes kidney disease (20% vs. 10%).

More than one-half of respondents who did not understand kidney disease (56%) were unable to identify any causes for the disease compared to 43% of those who gave a correct definition.

Aided Awareness of Diabetes as a Cause of Kidney Disease

Q16a: Have you ever heard that diabetes is one of the leading causes of kidney disease?

Just over one-half of respondents (52%) said they were aware of the connection between diabetes and kidney disease. Respondent age and all of the medical and risk factors impacted the response frequencies on this question. Older respondents and those at risk for or who had been tested for kidney disease expressed higher awareness of the connection between diabetes and kidney disease.

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Age

Older respondents (64%) were more often aware that diabetes could cause kidney disease than younger respondents (41% among those 30 to 34 years of age, and 46% among those 35 to 44 years of age).

Risk Status

About two-thirds of respondents at risk (63%) were aware of diabetes as a cause of kidney disease compared to just 43% of those not at risk.

Not surprisingly, the awareness of the connection between diabetes and kidney disease was highest among patients with diabetes (81%), in contrast to just 48% among those not diagnosed with diabetes. Similarly, about two thirds of respondents with hypertension (63%) were aware that diabetes is a leading cause of kidney disease, compared with 46% of those not diagnosed with hypertension.

Three in five respondents who had a family history of kidney failure (60%) said they knew diabetes was a leading cause of kidney disease. One-half of those with no such family history (51%) gave the same response.

Test Status

Nearly two-thirds of respondents who had been tested for kidney disease (64%) were aware of diabetes as a cause compared with less than half (46%) of those never tested.


Respondents who accurately defined kidney disease (56%) were somewhat more aware that diabetes caused the disease, than those who did not correctly describe kidney disease (48%).

Aided Awareness of Hypertension as a Cause of Kidney Disease

Q16b: Have you ever heard that hypertension is one of the leading causes of kidney disease?

About one-third of respondents (36%) were aware of the connection between hypertension and kidney disease, a number that is much lower than the proportion that were aware of the link between diabetes and kidney disease (52%).

Gender, age, income, education, and all of the medical sub-groups impacted responses. Those at risk or tested for kidney disease had increased awareness of the connection between kidney disease and hypertension, but in most cases, a majority still was unaware that hypertension is a leading cause of kidney disease.


Gender

Slightly more women than men said they knew that hypertension caused kidney disease (38% vs. 32%).

Age

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Older respondents were more cognizant that hypertension can cause kidney disease. Almost one-half of respondents over the age of 54 (46%) were aware compared to a quarter of those between the ages of 30 and 34 (26%).

Income

Awareness of hypertension as a cause of kidney disease seemed to follow a U-shaped pattern, dipping lower in the middle-income category. Fewer respondents earning between $40K and $59K (31%) were aware that kidney disease could be caused by hypertension than those with higher or lower household incomes (41% among respondents earning $60K or more and 39% among those earning under $20K annually).

Education

More respondents with at least a Bachelor’s degree (42%) than those with high school or less education (34%) or those with some college or an Associate’s degree (34%) said they were aware of the connection between hypertension and kidney disease.

Risk Status

Almost one-half of at-risk respondents (45%) said they knew hypertension is a risk factor for kidney disease, whereas just 29% of those not at risk were aware of this.

Over one-half of respondents who had diabetes (51%) were aware that hypertension caused kidney disease compared to just one-third of those not diagnosed with diabetes (34%). Similarly, almost one-half of respondents who had hypertension (47%) indicated awareness of its link to kidney disease, compared with 31% of those not diagnosed with hypertension..

Test Status

Nearly one-half of respondents tested for kidney disease (48%) knew hypertension is a risk factor for the disease compared to 30% of those never tested.


About four in 10 respondents who correctly defined kidney disease as a stoppage or reduction in kidney function (40%) said they were aware hypertension caused the disease. Somewhat fewer (33%) of those who did not accurately describe kidney disease made the same connection.

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Perceived Risk Factors

Q15: Who do you think is more likely to get kidney disease or is at a higher risk for kidney disease?

The most commonly named risk factors and the proportion of people that named that factor are shown below.

Perceived Risk Factors for Kidney Disease(Percent, Multiple Responses Allowed)

Race African Americans

1918

Consumption of certain foods and beveragesThose who drink/don’t drink certain beveragesThose who eat/don’t eat certain foods

16135

Patients with diabetes 14Patients with hypertension 12Older people 6Gender

MenWomen

853

Those who are overweight 3Family members of ESRD patients 2Other 12Don’t know/don’t remember 29

Overall, about 19% mentioned race as a risk factor, most of whom thought African Americans are at greater risk. Gender was mentioned as a factor by 8% of the respondents. Another 16% mentioned risks related to consuming or not consuming certain foods or beverages.

Over a quarter (29%) said they did not know who is at greater risk for CKD.


GenderThere were a few gender-related differences in risk factors mentioned. Men were more likely than women to think that CKD risk is associated with eating or drinking certain foods and beverages (21% vs. 15%) or to give some other (unlisted) risk factor (16% vs. 11%). Also, more than twice as many women as men thought that CKD risk is associated with diabetes (18% vs. 7%) and that women are at higher risk than men (4% vs. 2%).

AgePeople in the 65+ category were less likely to think that the risk for CKD is related to gender; about 3% of this age group said that either men or women are at greater risk for CKD compared with 13% of the 30-to-34 age group. The intermediate age categories were close to the overall mean of 8%.

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Similarly, those in the 65+ age category were less likely to associate CKD with drinking or not drinking certain beverages than those in the 30 to 34 age group (10% vs. 19%), with the middle age ranges close to the overall mean of 16% on this item. Those in the 65+ age group were also less likely to mention other (unlisted) risk factors (5% vs. a mean estimate of 13% for the other age categories).

Younger people were more likely to cite age as a risk factor. Twice as many people in the 30 to 34 age group related CKD risk to (older) age than the other age groups combined (12% vs. 6%).

There was also a U-shaped pattern in the mention of hypertension as a risk factor, with fewer people in the oldest and youngest age categories mentioning this risk than in the middle categories.

IncomeThere was a clear relationship between income and identification of hypertension as a risk factor for CKD. The proportion of people that mentioned hypertension as a risk factor for CKD ranged from 9% in the lowest income category to 25% in the uppermost income category, with responses in the middle categories roughly arrayed in ascending order.

There was some income-related variation on some of the other risk factors, but no reliable patterns could be discerned. For example, only 2% of those with incomes less than $20K thought that men are more at risk than women, while 11% of those in the next income category ($20-39.9K) thought so, with the other income groups arrayed in the middle of that range. In a similar pattern, 22% of those in the $80-99.9K income category gave some response related to consumption of certain foods and drinks, compared with 10% in the $100K and more category and an average value of about $17K for all the lower income categories (up to $79.9K).

EducationAs in the case of income, there was some variation in responses based on education but the pattern of variation was not always discernible. In many cases, this variation was on responses that had been selected by relatively few respondents overall. For example, identification of obesity/overweight as a risk factor was related to education: roughly 2-3 percent of the population in the lower education brackets identified this as a risk factor for CKD; this number rose to 5% for those with a college degree, and 7% for those with a graduate degree.

There was a clear trend with regard to the mention of hypertension as a risk factor. Roughly 10% of those with some college education or less mentioned this risk factor, compared with 15% of those with an Associate’s degree, 17% of those with a college degree, and 21% of those with a graduate education.

Mention of some risk factors appeared to follow a U-shaped pattern, with the proportion of people that mentioned them being lower in the lowest and highest education brackets. For example, the proportion of people who said that men are at higher risk for CKD was 2% in the lowest education category (less than high school), rose to about 9% for those who had a college degree, but fell again to 4% for those who had a graduate education.

LocationThere were no differences between the pilot and control sites in the frequency with which each of these risk factors was mentioned. The data from the four pilot sites were also fairly consistent with one exception—only 2% of people in Jackson said men are at higher risk for CKD compared with 5% for all the pilot sites and up to 10% in Atlanta.

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Risk StatusThose who had risk factors for CKD were more likely to mention diabetes and hypertension as risk factors and less likely to mention other factors such as gender, age, overweight or unlisted risk factors, or to say they did not know any risk factors. Almost a quarter (21%) of those with diabetes and 18% of those with hypertension mentioned hypertension as a risk factor (compared with 12% of those who did not have diabetes and 10% of those who did not have hypertension). Similarly, 34% of patients with diabetes mentioned diabetes as a risk factor compared with 11% of those who did not have diabetes.

The proportion of patients who mentioned diabetes and hypertension as risk factors was also higher among those with a family history of CKD (22% mentioned diabetes and 19% mentioned hypertension) compared to those that did not have family risk factors (among whom 14% mentioned diabetes and 12% mentioned hypertension).

Those at risk for CKD were not more likely than others overall to mention African-American race and family history as risk factors. However, those with a specific risk factor—a family history of CKD—were more likely to mention African-American race as a factor (26% vs. 18%). Those with a family history of CKD were also somewhat more likely to say that family members of CKD patients are at higher risk, but this overall number (and the corresponding difference) were small (4% vs. 2%).

Test StatusThose who had been tested for CKD were more likely than those who had not been tested to know that diabetes is a risk factor for CKD (18% vs. 13%) and less likely to say they do not know who is at greater risk for kidney disease (25% vs. 34%).

Knowledge of CKD DefinitionThose who knew what CKD is were more likely to identify African-American race (22% vs. 17%), hypertension (18% vs. 8%) and diabetes (20% vs. 10%) as risk factors for CKD. They were less likely to say they do not know any risk factors for CKD (25% vs. 34%).

Perception of Family Risk

Q24c: To what extent do you think having a relative with kidney failure increases a person’s risk for kidney disease? Would you say it increases the risk of kidney disease not at all, a little, somewhat or a great deal?

About a fifth of respondents either did not answer this question or said they did not know. Of those who answered the question, about 13% said that having a relative with kidney failure does not increase a person’s risk for kidney disease at all and another 17% said this increases one’s risk only a little. The remaining 70% said that a family history increases a person’s risk of getting kidney disease somewhat (42%) or a great deal (29%).

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Perceived Increase in Personal Risk of Kidney Disease from Having a Relative with Kidney Failure

(Percent)Not at all 11A little 13Somewhat 34A great deal 23Don’t know 12

Responses to this question varied by gender, education, location, risk status and test status.


GenderWomen were slightly more likely than men to say that this factor affected one’s risk for kidney disease a great deal (30% vs. 25%).

EducationRecognition of this risk factor was related to respondents’ education level. Generally speaking, those with less education were more likely to say that family history does not increase one’s risk for kidney disease, while more people in the higher education brackets acknowledged the risk. More than a fifth (22%) of those with less than a high school education said that family history does not affect one’s risk compared with 8% of those with a college education or more.

LocationThere were no differences in the pilot and control sites on this question. Among the pilot sites, respondents in Cleveland were slightly less likely to say that this factor affects risk a great deal and those in Atlanta were slightly less likely to say that this factor does not affect risk at all.

Risk StatusPeople who had any or all of the risk factors for CKD were all slightly more likely to say that family history affects a person’s risk a great deal (see the table below).

Perception that Family History Affects a Person’s Risk for Kidney Disease “A Great Deal”

Yes NoAt risk for CKD (i.e. has any of the following risk factors)

36% 23%

Has diabetes 42% 27%Has hypertension 34% 26%Has family history of CKD 36% 28%

On most of the variables there were no differences among these sub-groups in the proportion of people who said that this factor does not affect risk at all. The one exception to this pattern was family history of CKD itself: fewer people who had CKD in their family said that this does not affect a person’s risk at all compared to those who did not have a family history of CKD (8% vs. 14%).

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Test StatusThose who had been tested for CKD were more likely than those who had not been tested to say that family history affects a person’s risk for kidney disease a great deal (34% vs. 26%).

Knowledge of CKD DefinitionThose who could correctly define kidney disease as a stoppage/reduction in kidney function were somewhat more likely to say that family history affects a person’s risk for CKD a great deal (32% vs. 26%).

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3. Prevalence of Risk Factors

Prevalence of Diabetes in the Sample

Q6: Do you have, or has a doctor or other health care provider ever said you have, diabetes?

Just over one 10 respondents indicated they have diabetes (13%). This prevalence is the same as the national estimate of prevalence of diabetes among African-American adults in the United States.13

Prevalence of diabetes, one of the key risk factors for kidney disease, was highest among older respondents, those with lower income or lower education, and slightly higher for women than men. Diagnosis of hypertension and testing for kidney disease also impacted responses. Interestingly, there were no significant differences between respondents who correctly defined kidney disease and those who did not.


Gender

Women in the sample (15%) were slightly more likely to have diabetes than men (10%).

Age

Older age groups were more likely to say they had diabetes. Just 3% of respondents ages 30 to 34 had diabetes, compared with three times as many 35 to 44 year-olds (9%) and over one-quarter of those 55 or older (26%).

Income

Respondents earning under $20K annually were most likely to report they had diabetes (25%) compared to about one in 10 of respondents from higher-income brackets.

Education

Those with the least education reported the highest prevalence of diabetes. About one-fifth of respondents with a high school education or less (20%) reported they had diabetes. In comparison, roughly one in 10 respondents with some college or an Associate’s degree (12%) and those with a Bachelor’s degree or more education (10%) said they had diabetes.

Risk Status

Respondents diagnosed with hypertension were more likely to have diabetes, 26% compared to 7% of those not diagnosed with hypertension.

Test Status

Twice as many respondents who had been tested for kidney disease (21%) than those never tested (9%) said they had diabetes.

13 National Diabetes Information Clearinghouse. National diabetes statistics. NIH publication 02-3892. 2002. Fact sheet. Available at www.niddk.nih.gov/health/diabetes/pubs/dmstats/dmstats.htm. Accessed April 4, 2002.

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Prevalence of Hypertension/High Blood Pressure in Sample

Q10: Do you have, or has a doctor or other health care provider ever said you have, high blood pressure or hypertension?

About one-third of respondents (34%) reported having high blood pressure or hypertension, close to three times that of diabetes.

Prevalence of hypertension/high blood pressure mirrors that of diabetes; highest reports of the condition were given by older respondents, those with lower income or lower education, or women. Diagnosis of hypertension and testing for kidney disease also impacted responses. Interestingly, there were no significant differences between respondents who correctly defined kidney disease and those who did not.


Gender

Slightly more women than men surveyed had high blood pressure or hypertension (36% vs. 30%).

Age

More than one-half of respondents over the age of 54 (55%) indicated they have high blood pressure or hypertension, compared to half as many for those 35 to 44 years-old (24%) and just 15% of the youngest respondents aged 30 to 34.

Income

Nearly one-half of respondents earning less than $20K (47%) had high blood pressure or hypertension, compared to about three in 10 of those earning higher incomes reporting having the same condition.

Education

Respondents with a high school education or less (42%) reported a higher prevalence of high blood pressure/hypertension than those with any schooling beyond a high school diploma (32% for those with some college or an Associate’s degree and 30% for those with at least a Bachelor’s degree).

Risk Status

As noted in the previous section, there was a significant overlap between persons with diabetes and hypertension/high blood pressure in the sample. Two-thirds of respondents diagnosed with diabetes (68%) also said they have hypertension or high blood pressure compared to less than one-third of those who do not have diabetes (29%).

Test Status

Almost twice as many respondents who have been tested for kidney disease (49%) said they have hypertension or high blood pressure compared to those never tested (27%).

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Q24: Have you ever known anyone with kidney failure? This would be someone who had dialysis or a kidney transplant. Q24a: Who did you know with kidney failure?Q24b: What relative had or has kidney disease?

Two-thirds of the sample knew someone with kidney failure (67%) and just less than one-half of those respondents knew a relative (47%). Among those who knew a relative with kidney failure, one-third (36%) knew a close blood relative (parent, grandparent, child or sibling) with kidney failure. As a result, approximately 11% of the total sample had a family history of kidney failure, which placed them at risk for the disease.

Response to Q24: Know Anyone With Kidney Failure (Percent of total sample)

Yes 67No 32

Response to Q24a: Relationship to Kidney Failure Patient(Percent of those who know someone with kidney failure, n= 1350)

Friend/Co-worker 50

Relative 47

Other 11

Response to Q24b: Type of Relative with Kidney Failure(Percent of those who know a relative with kidney failure, n=636)

Close Family:

Parent 16Sibling 11Grandparent 8Child 2

Extended Family:Aunt or Uncle 25Cousin 19Non-blood relative (step or godparent) 19Other 8

Family History of Kidney Failure (Percent of total sample)

Yes 11No 89

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Age

Although no significant differences emerged by age, there was a slight trend for more of the older respondents to know someone with kidney disease than their younger counterparts.

Younger respondents who knew someone with kidney failure were more likely to name a relative, and less likely to name a friend or co-worker. Over one-half (58%) of respondents between the ages of 30 and 34 knew a relative compared to 42% of those over the age of 54. In contrast, 34% of the youngest age group named a friend or co-worker, and 50% of the eldest group did.

One third of respondents aged 30 to 34 who knew a relative named an aunt or uncle (35%), compared to just 13% of those over the age of 54 in the same sub-sample. No other pattern emerged by age group.

Income

No pattern of responses emerged by income with regard to whether or not the respondent knew anyone with kidney failure.

Nearly six in 10 respondents earning less than $20K who knew someone with kidney failure (57%) named a relative compared to less than half of the comparable group of $60K or more annual income earners (49%). The reverse trend is true as well; fewer of the lowest income group (41%) mentioned a friend or co-worker than did the highest income bracket (55%).

Among respondents earning $40K to $59K annually, 44% knew a relative who had kidney failure. In contrast, just 35% of those earning less than $40K and 29% of those making $60K or more gave the same response.

Education

The more education a respondent had, the more likely it was they knew someone with kidney failure. Nearly six in 10 respondents with a high school education or less (59%) knew someone with kidney failure, compared to two-thirds of those with some college or an Associate’s degree (67%) and over three-fourths of respondents with graduate schooling (76%).

When asked who they knew with kidney failure, respondents with at least a Bachelor’s degree (55%) were more likely than those with just a high school education or less (46%) to name a friend or co-worker. College graduates and those with graduate schooling were also less likely to name a relative (40%) than those with less education; (50%) among high school graduates or less and 49% among those with some college of an Associate’s degree.

The only pattern evident among those who named a relative was that fewer of those with at least a Bachelor’s degree (12%) mentioned a cousin than the less-educated sub-samples (23% among those with a high school education or less and 20% among those with some college or an Associate’s degree).

Location

More respondents from the pilot cities (69%) knew someone with kidney failure than those in the control group (62%). More of Baltimore (73%), Jackson (70%), and Cleveland (69%) respondents knew someone with kidney failure than the control group. Only Atlanta residents mirrored the control group (62%).

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No pattern emerged between pilot and control location respondents with regard to the relationship respondents had to the person(s) who had kidney failure.

Over four in 10 of the control group who knew a relative with kidney failure mentioned a blood relative (42%) compared to one-third of the pilot sites’ respondents (34%).

Risk Status

Respondents at risk for kidney disease (72%) were more likely to know someone with kidney failure than those not at risk (59%).

Those at risk who knew someone (61%) were more likely to name a relative than those not at risk (33%). Almost two-thirds of respondents who were not at risk for kidney disease mentioned a friend or co-worker (62%) compared to those at risk (39%).

More patients with diabetes (78%) and hypertension/ high blood pressure patients (74%) said they knew someone with kidney disease than those not diagnosed with diabetes (66%) or hypertension/high blood pressure (64%).

More than one-half of patients with diabetes who knew someone with kidney failure (56%) knew a relative, compared to respondents without diabetes (46%). Likewise, 52% of patients with hypertension knew a relative, compared to those not diagnosed with hypertension (45%).

Risk Status (Continued)No significant differences were found in mention of blood relatives among those diagnosed with hypertension or diabetes versus those who did not have these health problems, based on those who reported knowing a relative with kidney failure. However, as the table below shows, there is a sizeable percentage of overlap between the medical risk factors and the family history of kidney failure.

Know a Blood Relative with Kidney Failure (Percent of those who know a relative with kidney failure)

Patients with diabetes 34Hypertension/high blood pressure patients 34

The only significant variations did not involve close relatives; those who had diabetes were slightly more likely to name a cousin, whereas more of those who were not diagnosed as having diabetes mentioned non-blood relatives.

Test Status

Nearly three-quarters of respondents tested for kidney disease (72%) reported that they knew someone with kidney failure compared to 64% of those never tested for the disease.

Among those who knew someone with kidney failure, there were no differences in the relationship to the respondents based on respondent test status.

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Respondents who had been tested for kidney disease and knew a relative with the disease (39%) were more likely to mention a blood relative than those never tested (31%).


More respondents who accurately defined kidney disease as a reduction or stoppage in kidney function (72%) said they knew someone with kidney failure than those who did not (62%).

Over one-half of respondents who knew someone with kidney failure and correctly described the disease (53%) named a friend or co-worker compared to 47% of those who did not define kidney disease accurately.

Respondents who correctly defined kidney disease were more likely to name a blood relative they knew who had kidney failure (40%), compared to those who did not (31%).

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4. Experience with Diabetes

Perceived Seriousness of Diabetes

Q3: As you may know, many African Americans have diabetes or sugar diabetes. If a person does not take care of their diabetes, do you think it is very likely, somewhat likely, likely, somewhat unlikely or very unlikely they will suffer serious negative effects on their health?

Nearly all respondents (98%) said it was likely someone with untreated diabetes will suffer serious negative effects on their health, with the vast majority (85%) saying it was very likely.

Perceived Likelihood of Uncontrolled Diabetes Having Negative Health Effects(Percent)

Likely 98 Very likely 85 Somewhat likely 6 Likely 8Unlikely 2 Somewhat unlikely 1 Very unlikely 1

This finding was fairly consistent across demographic categories with some income- and education-related variation among those who rated uncontrolled diabetes as very likely to cause serious negative effects on one’s health.


IncomeSignificantly more respondents (95%) in the highest income category ($100K plus) and in the $60K to $79K category (91%) said uncontrolled diabetes was very likely to have serious negative effects compared to those in other income categories (ranging from 80% to 84%).

EducationSignificantly more respondents (95%) in the some graduate school and graduate school categories (90%) said uncontrolled diabetes was very likely to have serious negative effects compared to those in other income categories (ranging from 80% to 85%).

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Negative Effects of Diabetes

Q4: Do you have any idea of what these negative effects might be?

The most common negative effects on one’s health mentioned were amputation (40%) and blindness (36%). Less than a fifth (17%) named kidney disease as a serious negative effect of uncontrolled diabetes.

Negative Effects of Untreated Diabetes

(Percent)Amputation 40Blindness 36Premature death 20Kidney disease 17Heart attack 16Stroke 12Insulin dependency 2Nothing will happen *Other 24Don’t know 18* Less than 0.5%

The frequency with which these negative health effects were named varied by demographic characteristics and by risk status and knowledge of CKD.


GenderFewer men (28%) than women (39%) named blindness as a negative effect of uncontrolled diabetes. Fewer men (12%) than women (19%) also named kidney disease as a negative effect. Conversely, more men than women said they did not know what the negative effects of uncontrolled diabetes would be (24% vs. 16%).

AgeFewer respondents aged 65 or older named amputation (28%) or premature death (11%) as a complication of uncontrolled diabetes compared to respondents in other age groups (amputation was named by 37% to 47% of respondents in other age categories and premature death was named by 19% to 24% of other respondents). On the other hand, the proportion of respondents that named heart attacks as a possible negative consequence of diabetes increased steadily with age, ranging from 11% of those ages 30-34 up to 26% of those in the 65+ age group.

IncomeRespondents with higher incomes named amputation, blindness and kidney disease as serious negative effects of uncontrolled diabetes more often. About 27% of those with an annual income of less than $20K named amputation/limb loss as a consequence, compared with about half of those with incomes of $60K or more (with the middle-income categories aligned along the middle of that range). Similarly, 21% of those with incomes of less than $20K named blindness

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as an outcome compared with the overall mean of 36%. For kidney disease, the trend was less consistent, but people in the highest income category ($100K or more) were almost twice as likely to mention this health consequence as the rest of the sample (30% vs. 17%).

EducationEducation impacted whether respondents named amputation, blindness and kidney disease as a serious effect of uncontrolled diabetes. Of respondents with less than a high school education, 17% named amputation compared to 32% to 60% of respondents with other education levels. The proportion of people that named this health consequence rose steadily with education up till the second-highest education category (some graduate school) but then fell for those with a graduate degree.

Approximately a quarter of those with a high school education or less named blindness compared to 37% to 48% of respondents in other education categories. Similarly, 13% of those with a high school education or less named kidney disease compared to 23% with some graduate school or a graduate degree.

LocationThere were no differences between the pilot and control sites. However, the pattern of responses was slightly different for Jackson. More respondents in Jackson named kidney disease (23%) as a negative effect compared to all respondents in the pilot (18%) and control (14%) sites. Fewer respondents in Jackson named amputation (31%) or blindness (30%) as a negative effect compared to respondents overall (40% and 36%, respectively).

Risk StatusA higher proportion of those at risk for kidney disease named kidney disease as a serious negative effect of diabetes compared to those not at risk. Roughly 12% of those who were not at risk for kidney disease named it as a consequence of diabetes, compared to 24% of those at risk. Among those who said they had diabetes, 47% named amputation, 46% blindness and 29% kidney disease compared to 39%, 34% and 15% of those who did not have diabetes, respectively. Of those who said they had hypertension, 22% named kidney disease compared to 15% who said they did not have hypertension. Similarly 32% who had a family history of kidney failure named kidney disease as a consequence of diabetes and 47% named blindness (compared to 15% and 34%, respectively, of those with no family history of kidney failure).

Knowledge of CKD DefinitionCompared to those who could not correctly define kidney disease, a higher proportion of those who did know what kidney disease is named kidney disease and blindness as serious negative effects of uncontrolled diabetes. Among those who understood kidney disease, 21% named kidney disease and 44% named blindness compared to 13% and 29% of those who did not understand it.

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Knowledge of Routine Tests for Diabetes

Q5: Do you happen to know what kind of tests a person with diabetes should have regularly?

Three-quarters of respondents (76%) named a blood test of some kind, 6% named a urine test, 2% an eye exam and 1% a foot exam. Almost a quarter (24%) said they did not know or recall what kind of tests a person with diabetes should regularly have.

Of those who named some kind of blood test, 60% said daily blood glucose monitoring, 23% said a blood test without specifying what kind, and 3% said a Hemoglobin A1c test. Of those who named a urine test, 5% said a urine test without specifying what kind, with 3 to 5 respondents (less than 1%) naming a specific urine test such as proteinuria, microalbuminuria, creatinine or GFR.

Tests that Patients with Diabetes Should Have Regularly

(Percent of Total Sample)Blood test 76 Daily blood glucose 60 Blood test (unspecific) 23 Hemoglobin A1c 3Urine test 6 Urine test (unspecific) 5 Proteinuria * Microalbuminuria * Creatinine * GFR *Eye exam 2Foot exam 1Don’t know/don’t remember 24* Less than 0.5%

There were some consistent demographic variations on this question, but the differences were relatively small except in the case of education. Responses also varied by respondent risk status and knowledge of CKD definition.


GenderFewer men (70%) named some kind of blood test compared to women (78%).

AgeFewer adults aged 65 or older (71%) named a blood test of some kind, compared to those aged 30-34 (78%). Specifically, 54% of those 65 or older named daily blood glucose monitoring compared to 68% of those aged 30-34.

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IncomeFewer adults making less than $20K per year (72%) named a blood test of some kind, compared to 82% of those making $60K-$99K per year. Specifically, 56% of those making less than $20K named daily blood glucose monitoring compared to 71% of those making $60-100K.

EducationEducation had a significant impact on responses. The general trend was that those with higher education levels named blood tests generally and daily blood glucose monitoring specifically more often than those at lower education levels. Roughly 61% of those with less than a high school education named a blood test of some kind compared to between 69% and 85% of respondents in other education categories. Those with a community college degree most often named a blood test of some kind.

Risk StatusNot surprisingly, more respondents who said they had diabetes named a blood test of some kind or daily blood glucose monitoring than respondents who did not have diabetes. Among those who said they had diabetes, 89% named a blood test of some kind and 71% named daily blood glucose monitoring, compared to 73% and 58%, respectively, of those who did not have diabetes.

Knowledge of CKD DefinitionCompared to those who did not know what kidney disease was, a higher proportion of those who did know named a blood test of some kind or daily blood glucose monitoring. Among those who understood kidney disease, 82% named a blood test of some kind and 65% named daily blood glucose monitoring, compared to 69% and 54% of those who did not understand it.

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Steps Taken by Patients to Manage Diabetes

Q6a: What are you doing to manage your diabetes or keep it under control?

As reported earlier (Section 3: Prevalence of Risk Factors), roughly 13% of the total sample had diabetes. Respondents who had diabetes (n=269) most often said they were making lifestyle changes (74%) or taking medication (73%). Very few (3%) said they were doing nothing at all.

Steps Taken by Patients to Manage Diabetes(Percent of Patients with diabetes)

Lifestyle changes 74.3 Dietary changes 70.0 Exercise 36.4 Weight loss 6.7Taking medication 72.5 Prescription medication

54.6

Insulin 22.7 Nutritional/herbal supplements

.7

Other 5.2Doing nothing 2.6Meditation/spiritual intervention

1.1

Alternative therapy .7

Patients’ responses to this question varied by age, income, education, and their test status.


AgeMore respondents aged 65 and older were taking medication compared to younger respondents, more of whom were making lifestyle changes to control their diabetes. Of those aged 30-34, 89% said they were making lifestyle changes to control diabetes compared to 68% of those aged 65 or older. However, 85% of those aged 65 or older were taking medication compared to 44% of those aged 30-34.

IncomeResponses to this question differed based on respondents’ income level but no clear pattern of responses emerged. Between 63% and 80% of respondents in different income categories were making lifestyle changes, with those in the $60K-79.9K income category least often reporting lifestyle changes and those making $40-59.9K and those making $100K or more reporting such changes most often. Between 50% to 100% of those in different income categories were taking medication, with those making $60K-80K most often reporting taking medication and those making $100K least likely to be doing so.

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EducationResponses to this question differed based on respondents’ education level but no clear pattern of responses emerged. Between 62% and 82% of respondents in different education categories were making lifestyle changes, with community college and college graduates most often reporting lifestyle changes and those with graduate degrees reporting such changes least often. Between 69% to 92% of those in different education categories were taking medication, with college graduates most often reporting taking medication and those with graduate degrees taking medication the least.

Test StatusSignificantly more respondents who said they had been tested for kidney disease said they were making both lifestyle changes (85%) or taking medication (78%) compared to those who had not been tested (61% and 66%, respectively).

Knowledge of CKD DefinitionAmong those who understood kidney disease, 80% said they were making lifestyle changes compared to 69% of those who did not understand it.

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Self-Ratings of Compliance

Q6b: On a scale from 1 to 10, how well do you think you follow your doctor’s or health care provider’s recommendations for your diabetes? A 1 means you do not follow at all what your provider recommends and a 10 means that you do everything your provider recommends.

Respondents with diabetes rated their compliance with physician recommendations as strong, giving themselves a mean rating of 7.5 on a 10-point scale. The only factors that affected this response were age of respondent and whether or not they had been tested for CKD.


AgeThere was a significant difference in response based on respondent’s age. Respondents aged 30-44 rated their compliance significantly higher (mean = 8.0) and those aged 45-54 rated it significantly lower (mean = 6.8) than respondents aged 55-64 and those aged 65 and older (mean = 7.46 and 7.8, respectively).

Test StatusRespondents who said they had been tested for kidney disease rated their compliance significantly higher (mean = 7.8) than those who had not been tested (mean = 7.2).

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5. Experience with Hypertension

Perceived Seriousness of Hypertension

Q7: As you may know, many African Americans also have high blood pressure or hypertension. If a person does not take care of their high blood pressure, do you think it is very likely, somewhat likely, likely, somewhat unlikely or very unlikely they will suffer serious negative effects on their health?

Virtually all respondents (94%) indicated negative effects are at least somewhat likely, with an overwhelming majority saying that they are very likely (87%).

Respondents’ age, education, gender, location and knowledge of the definition of kidney disease all impacted the perceived seriousness of letting hypertension go untreated. The overall variation on this item is quite small (although statistically reliable).


Gender

More women than men believed negative health effects were very likely if hypertension remained untreated (89% vs. 83%).

Age

The variation by age was slight; slightly more respondents between the ages of 45 and 54 (90%) than those 55 years or older (84%) said serious negative effects were very likely if high blood pressure was not treated.

Education

Respondents with less education perceived unchecked high blood pressure as less serious than more educated respondents; 91% of those with at least a Bachelor’s degree said negative effects are very likely, compared to 83% of respondents with a high school degree or less.

Location

There were no significant differences between control and pilot site respondents. Among the control sites, fewer Jackson residents (84%) than those in Baltimore (89%) or Cleveland (89%) said negative effects of not treating hypertension are very likely.


Nine in 10 respondents who correctly defined kidney disease as a reduction or stoppage of kidney function (90%) said negative effects of not treating hypertension were very likely, compared to 85% of those who did not describe the disease in that manner.

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Negative Effects of Hypertension

Q8: Do you have any idea of what these negative effects might be?

Heart-related problems topped the list, with two-thirds reporting stroke (64%) and nearly one-half saying heart attack (47%). As mentioned in Section 1 (Awareness of CKD) of this report, few respondents (8%) mentioned kidney disease as a negative health consequence of untreated hypertension.

Perceived Negative Effects of Untreated Hypertension/High Blood Pressure

(Percent)

Stroke 64Heart attack 47Premature death/death 18Kidney disease/kidney failure/ End Stage Renal Disease (ESRD)

8

Amputation/limb loss 2Other 15Don’t know/Don’t remember 11

Perceived consequences of not taking care of high blood pressure or hypertension were impacted by age, income, education, gender, risk status, test status, and knowledge of kidney disease. Respondents tested for kidney disease and those with hypertension identified kidney disease slightly more often as a consequence of untreated hypertension.


Gender

Two-thirds of women (67%) named stroke as a consequence of not taking care of hypertension or high blood pressure, compared to a little more than half the men (56%).

Age

A pattern of higher frequency of mentions emerged among respondents between the ages of 45 and 54. This age group mentioned stroke (76%), heart attack (52%) and premature death (22%) more often than other age groups. For example, 64% of respondents ages 55 and older named stroke, 44% said heart attack, and just 15% listed premature death. The respondents in the 45-54 age group were also less likely than those 55 and older to say that they did not know any consequences of not caring for one’s hypertension (7% compared to 14% of the older age group).

Income

More respondents earning $60K or more (24%) cited premature death as a consequence of leaving hypertension untreated than those in lower-income brackets. Just 17% of respondents whose annual household income was less than $20K gave the same response.Those in the lowest-income bracket ($20K or less) were less likely to list heart attack as a negative health consequence and more likely to say they did not know any consequences of hypertension. One-third of respondents earning less than $20K annually (35%) believed heart

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attack to be a negative effect of untreated hypertension compared to about one-half of the higher wage earners. Also, one in six respondents earning less than $20K (15%) did not know any consequences of hypertension, compared to just 8% of those making more than $60K.

Education

Respondents with a high school education or less mentioned stroke (61%) and premature death (17%) less often than those with a Bachelor’s degree or more education (67% and 22%, respectively). In contrast, about one in six of respondents with a high school education or less (15%) said they did not know any negative effects, compared to 7% of those with at least a Bachelor’s degree.

Risk Status

More respondents at risk for kidney disease said stroke (71%) and/or heart attack (52%) were consequences of untreated hypertension than did those not at risk, 59% and 43%, respectively. Those not at risk were also more likely to say they did not know of any consequences of untreated hypertension (13% vs. 8%).

The same pattern was seen for patients with diabetes. Three-quarters of respondents with diabetes (74%) identified a stroke as a possible negative effect of not treating one’s hypertension, and just 63% of those not diagnosed with diabetes gave the same response. Conversely, twice as many respondents not diagnosed with diabetes did not know any negative effects of untreated hypertension (12% vs. 6%).

Patients with hypertension mentioned several effects more often than those not diagnosed with the condition. Three-quarters of patients with hypertension (73%) named stroke compared to 59% of those who do not have hypertension. Similarly, over one-half of those with hypertension (54%) said a heart attack was a possible outcome, while 44% of those not diagnosed gave the same response. Lastly, kidney disease was recognized as an effect of not treating hypertension among 10% of patients with hypertension and 6% of those not diagnosed.

More than one in 10 respondents not diagnosed with hypertension (13%) could not give a response to this question compared to 7% of those who had hypertension.

Test Status

Respondents tested for kidney disease identified several consequences of untreated hypertension more often than those never tested. Two-thirds of respondents tested for kidney disease (68%) said someone who did not treat his/her hypertension could have a stroke, compared with 62% of those who had never been tested. Consistently, over one-half of respondents tested named heart attack (51%) compared to 45% of those never tested. Additionally, nearly twice as many respondents tested for kidney disease (11%) named kidney disease as a possible outcome of untreated hypertension compared to those that had not been tested (11% vs. 6%).


Respondents who correctly described kidney disease identified stroke (68%) and/or heart attack (54%) as possible consequences of not taking care of one’s hypertension compared to those who did not define the disease accurately (60% named stroke and 41% said heart attack). Similarly, 8% of those who correctly described the disease did not name any negative consequences compared with 14% of those who did not correctly describe kidney disease as a stoppage or reduction in kidney function.

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Knowledge of Routine Tests for Hypertension

Q9: Do you happen to know what kind of tests a person with high blood pressure or hypertension should have regularly?

While three-quarters of respondents said people with hypertension should have their blood pressure tested (76%), less than 1% named specific tests used to identify kidney disease.

Tests that Patients with hypertension Should Have Regularly(Percent of Total Sample)

Blood tests 82Blood pressure test 76Blood test (general) 12Hemoglobin A1c/hbA1c/A1c 0.1

Urine tests 2Urine test (general)/urinalysis 2Creatinine/serum creatinine/creatinine clearance 0.4Proteinuria/urine protein/protein in the urine 0.2GFR/glomerular filtration rate 0.1

Eye/retinal/retinopathy exam/glaucoma exam/eye pressure test

0.2

Don’t know/Don’t remember 18

Gender, age, income, education, risk and test status significantly affected response to this question.


Gender

More women said those with hypertension should receive blood pressure tests regularly than did men (79% vs. 69%). One-quarter of men could not name any tests (24%) compared to 17% of women.

Age

Fewer respondents who are between 45 and 54 years of age were unable to identify any tests (12% compared to between 20% and 22% of each of the other age groups). Mention of blood pressure testing in particular was higher among those 45 to 54 years old. More than four in five respondents between the ages of 45 and 54 (84%) said patients with hypertension should regularly have their blood pressure tested compared to about three-quarters of those in the other age categories. Mention of urine tests, while generally very low, was even lower among this age category; just 1% of 45-54 year-olds mentioned any urine test compared to 3% of those 35 to 44 and 4% of those 30 to 34 years of age.

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Income

People in the lowest income category were less likely to say that patients with hypertension should get their blood pressure checked regularly and more likely to name no tests at all. Seventy-nine percent of each of the income groups above $20K mentioned blood pressure testing, but just two-thirds of respondents earning less than $20K annually (68%) gave the same response. One-quarter of those earning less than $20K (25%) did not know any of the tests required of high blood pressure/patients with hypertension compared to 16% of those making $20K to $39K, 17% of those earning $40K to $59K, and 13% of those earning $60K or more.

Education

As with income, people in the lowest education category were less likely to mention blood pressure tests and more likely to not name any regularly needed tests.

About two-thirds of respondents with a high school education maintained that patients with hypertension should have their blood pressure checked regularly, compared to about four in five respondents with at least some college (78% of those with some college or Associate’s degree and 82% of those with a Bachelor’s degree or more education). One-quarter of respondents with a high school degree or less (24%) could not name any tests, compared with 17% of those with some college and 14% of those with a Bachelor’s degree or more.

Risk Status

Those at risk for kidney disease were more likely to know that patients with hypertension should regularly have blood pressure tests and were less likely to name no tests at all. More respondents at risk for kidney disease (83%) stated that patients with hypertension should regularly have a blood pressure test than those not at risk (71%). Almost one-quarter of respondents not at risk could not name any tests (23%) compared with just over one in 10 of those at risk (13%).

As expected, patients with hypertension were more likely than those who did not have hypertension to know that regular blood tests are required. Eighty-four percent of patients with hypertension named blood pressure testing, and 72% of those not diagnosed with the condition gave the same response. Twice as many respondents not diagnosed with hypertension did not know what tests were required of the condition (22% compared to 11%). Although the percentage is relatively low, it is surprising that any patients with hypertension did not know what tests were needed to monitor their condition.

Patients with diabetes were also somewhat more likely to mention some required tests. Nearly one-fifth of respondents not diagnosed with diabetes (19%) did not know what tests a patient with hypertension required regularly, while somewhat fewer respondents with diabetes (15%) also did not know.

Eighty-one percent of respondents with a family history of kidney failure suggested patients with hypertension should regularly have their blood pressure tested compared to 76% of those with no such family history.


Respondents who correctly defined kidney disease as a reduction or stoppage of kidney function were more likely to say blood pressure testing was required of people with hypertension than those who did not describe the disease accurately (82% vs. 71%).

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Steps Taken by Patients to Manage Hypertension

Q10a: What are you doing to keep your high blood pressure or hypertension in control?

As mentioned in Section 3: Prevalence of Risk Factors, approximately one-third of respondents had hypertension or high blood pressure (n=690). The table below illustrates that nearly all respondents reported that they had taken some action, most often medication or lifestyle changes or both. Three-quarters said they were using medication (76%), and about one-half said they had modified their diet (48%). Age, income, education, and experience with diabetes significantly impacted responses.

Steps Taken by Patients to Manage Hypertension(Percent of those with hypertension)

Medication/Monitoring 78Medication 76Regular monitoring 5

Lifestyle Changes: 54Dietary changes 48Exercise 26Weight loss 3

Staying calm, happy 4Meditation/spiritual intervention 2Nutritional/herbal supplements 2Nothing 2Other 8


GenderMen were slightly more likely than women to report the use of herbal remedies and nutritional supplements than women (6% vs. 1%).

Age

Older respondents who had hypertension were more prone to medicate, while more of the younger patients with hypertension sought lifestyle changes. Four in five patients with hypertension over the age of 54 (80%) reported using medication to control their hypertension compared to 65% of those ages 30 to 44. In contrast, almost two-thirds of patients with hypertension between the ages of 30 and 44 (61%) reported making at least some change to their dietary and exercise habits, whereas less than half (49%) of those 55 years and older gave that response.

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Income

Lifestyle changes were more common among patients earning at least $60K annually. Three-quarters of those with an annual household income of at least $60K (74%) reported that they had made changes in their diet and exercise, while about one-half of those in other income brackets made the same claim.

Conversely, somewhat fewer patients earning at least $60K annually (71%) said they were taking medication to control their hypertension than those in lower-income brackets (about 80%).

EducationHighly educated respondents mentioned lifestyle changes more often than those with less education. Two-thirds of respondents with at least a Bachelor’s degree (67%) reported they had made some kind of lifestyle changes while less than one-half (44%) of those with a high school education or less said so. This difference was especially pronounced for exercise changes, with 40% of those in the higher education bracket (Bachelor’s degree or more) mentioning this as a tool for controlling their hypertension, compared with 17% in the lower bracket (high school or less).

Although only mentioned by a few respondents, staying calm and happy was cited as a method of controlling hypertension by more of those with at least a Bachelor’s degree (7%) than those with a high school degree or less (2%).

Risk StatusMore patients with hypertension who did not have diabetes (28%) reported they exercised to control their condition than those who had both diabetes and hypertension (21%). Interestingly, patients with hypertension who did not also have diabetes reported slightly higher frequencies for meditation (3%) and/or staying calm and happy (5%) compared to those with both diabetes and hypertension (none of whom reported meditation and 2% mentioned staying calm and happy).

Very few respondents with hypertension reported a family history of kidney failure, and, as a result, few significant differences emerged. Those with no family history of kidney failure reported use of the meditation (3%), nutritional or herbal supplements (3%), and/or staying calm and happy (5%) with greater frequency than those with a family history of the disease (0%, 0% and 1%, respectively).


Patients with hypertension who knew about kidney disease were more likely to report both medication and lifestyle changes to combat their condition. More than four in five patients with hypertension who correctly described kidney disease as a reduction or stoppage of kidney function (83%) reported using medication to control their hypertension and 61% said they made lifestyle changes. Among those who did not accurately define kidney disease, 74% said they used medication and 48% said they had made lifestyle changes.

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Self-Ratings of Compliance

Q10b: On a scale from 1 to 10, how well do you think you follow your doctor’s or other health care provider’s recommendations for your hypertension? A 1 means that you do not follow at all what your provider recommends and a 10 means that you do everything your provider recommends.

Respondents who had hypertension were asked to rate how well they follow their doctor’s or health care provider’s recommendations to keep their condition under control. Respondents were given a 10-point scale where “1” meant they do not follow the provider’s recommendations at all, and a “10” meant they do everything recommended by their provider. On the 10-point scale, mean compliance was 8.22. Age, location and kidney disease testing significantly impacted respondent ratings.


Age

Respondents 45 and older (8.27 among 45 to 54 year-olds and 8.44 among those 55 or older) rated their compliance with medical recommendations more highly than those between the ages of 35 and 44 (7.47 on the 10-point scale).

LocationRespondents in Jackson gave themselves lower ratings on average (7.79 on the 10-point scale) compared to each of the other pilot sites, 8.36 from Cleveland, 8.40 from Atlanta and 8.42 from Baltimore respondents. There were no differences between the pilot and control samples.

Test Status

As regular testing could constitute following physician recommendations, it was not surprising that respondents who had been tested for kidney disease (8.42 on the 10-point scale) reported higher compliance scores than those who had never been tested (7.96).

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6. Perception of Personal Risk for CKD

Self-Risk Rating

Q17: How would you rate your risk for getting kidney disease? Would you say it is higher than average, lower or about average?

About 15% of respondents rated their risk as higher than average, 32% said it was lower than average, and 46% said it was about average. About 8% of respondents did not answer this question or said they did not know their risk level.

There was some variation in respondents’ self-ratings of risk based on age, income, education, and respondents’ risk status and test status.


AgeThose in the 65+ age category were almost twice as likely to identify themselves at higher risk than those in the 30-34 age category (23% vs. 12%), with the other age categories falling close to the overall mean. Conversely, 41% of those in the youngest age category thought their risk was lower than average, compared with 14% of those in the 65+ age group. Almost two-thirds of the people in the 65+ age group thought their risk was average, compared with about half in the other age categories.

IncomeThe number of people who believed themselves to be at average risk was highest in the lowest income category of less than $20K (61%) and fell as respondents’ income rose (37% for those with incomes of $80K or more). There was some variation but no clear pattern with regard to self-identification in lower or higher risk categories. Generally speaking, those in the bottom two income brackets ($40K or less) were less likely to regard themselves at lower risk than those in the remaining income brackets (27% vs. 45%).

EducationFollowing a similar pattern, those with less education (community college or less) were more likely to say their risk is average than those with some college, a college degree, or graduate education. Also similar to the variation by income, those with less education were less likely to identify themselves at lower risk; 17% of those with less than a high school education said they were at lower risk, compared with 41% of those with a college degree or better. There was little variation in identification of higher risk.

LocationThe responses of the pilot and control samples were similar on this question. Among the pilot sites, those in Atlanta were more likely to say they are at lower risk, while those in Jackson were more likely than the mean to rate their risk as average. This variation may be related to the demographic differences described above.

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Risk StatusThe table below shows the relationship between respondent’s perceived risk and actual risk (those respondents reported to have hypertension, diabetes and/or a family history of kidney failure).

Relationship of Perceived Risk and Actual RiskActual Risk Classification

(Percent)At Risk Not At Risk

Perceived Lower Risk 22 44Perceived Average Risk 52 48Perceived Higher Risk 26 8

As the table shows, ratings of personal risk were related to people’s actual risk status; those who were identified as at risk for CKD based on diabetes, hypertension or family risk factors, were more likely to rate their risk as higher than average than those who were not at high risk (26% vs. 8%). However, it is notable that only a quarter of those who were (objectively) rated at higher risk self-identified as such.

Correspondingly, those who had any one of the risk factors (diabetes, hypertension or a family history of kidney failure) were less likely to rate themselves at lower risk than those who did not have these risk factors (22% vs. 44%). Once again, it is important to note that about a fifth of those at high risk did rate their risk as lower than average. In fact, about as many high-risk people say their risk is lower than average as say that it is above average.

Close to half of people in both low- and high-risk categories rated their risk as average.

A look at self-ratings with regard to specific risk factors reveals that those with diabetes are most likely to place themselves in the high-risk category. Two-fifths (42%) of those with diabetes said they were at high risk (compared to 12% of those who did not have diabetes). Those with hypertension and a family history of kidney failure also tend to place themselves at higher risk, although these proportions are not as high as for diabetes. A quarter of those with hypertension and 19% of those with a family history of kidney failure also identified themselves at higher risk.

Test StatusTwice as many people who had been tested for CKD identified themselves at higher risk than those who had not been tested (24% vs. 12%).

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Reasons for Self-Risk Rating

Q18: Why do you think (your risk is higher than average, lower or about average)?

The table below shows the main categories of responses to this question.

Types of Reasons Given for Self-Risk Rating(Percent of Total Population)

Reasons related to general lifestyle or weight management issues 24Reasons related to disease status and disease management 20Reasons related to family’s health 19Reasons related to water/soda consumption 10Absence or presence of symptoms 6Race 3Taking medications 3No reason given/Do not know reason for risk status 16Other (unlisted) reason 20

Overall, about a quarter of respondents (24%) gave reasons related to general lifestyle and weight management for their risk ratings. These included having a poor/healthy diet, good/poor exercise habits, and being overweight or healthy.

A fifth of respondents gave disease-related reasons for how they had rated their risk, i.e. mentioning diabetes or hypertension as risk variables or adjusting their risk rating for the fact that their diabetes and/or hypertension was controlled. A similar number (19%) mentioned factors related to their family’s health, sometimes specifically mentioning family history of CKD.

A tenth of respondents offered reasons related to water or soda consumption for their risk ratings. These included either drinking a lot of water or not drinking enough, or drinking too much soda/pop or not drinking any.

Few respondents (6%) mentioned presence or absence of symptoms in relation to evaluating their risk, 3% mentioned their race as a factor, and another 3% said that their risk assessment was based (in part) on the fact that they take their medication.

A total of 16% said they did not know why they had assigned themselves a higher, lower or average risk rating and 20% gave another reason not listed among the pre-coded response options on the survey.

Other factors that were mentioned by a small number of respondents included those related to taking certain OTC/prescription medications, age (older or younger), or spiritual reasons.

Some subgroup differences among some key response categories—responses related to disease status and management, race, family health and risks, water/soda consumption, general lifestyle and weight factors, and presence/absence of symptoms—are reported here followed by a more detailed analysis of reasons given for higher or lower risk ratings.

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GenderWomen were slightly more likely than men to give a response related to disease status (22% vs. 16%) while men were a little more likely to factor lifestyle and weight into their risk attribution (28% vs. 23%).

AgeRespondents in higher-age categories were more likely to mention disease-related reasons for determining their risk of CKD, possibly because they are more likely to have these diseases. The proportion of respondents who mentioned this risk factor in evaluating their own risk ranged from 10% among 30-34 year-olds to 28% of those ages 65 and above, with the middle age groups aligned in order over the range.

Attribution of risk to family history of CKD was inversely related to age with 25% of 30-34 year-olds citing this factor and only 10% of those 65+ doing so. Those in the youngest age group were also more likely than those in the oldest age group to attribute risk to lifestyle and weight factors (35% vs. 19%) with the other middle age groups clustered around the overall mean value of 24%.

And finally, those 65 and older were less likely than other age groups to attribute risk to presence or absence of symptoms (3% vs. the overall mean of 6%).

IncomeThere was some variation but no discernible patterns and trends in risk assessment based on income.

EducationThose with less than a high school education were less likely to mention their family’s health as a factor in evaluating their own risks (5% vs. the overall mean of 19%).

Risk StatusThose who were at risk for CKD were about 10 times more likely to mention disease-related factors in assessment of their personal risk; 41% of those who were at risk for CKD mentioned disease-related factors vs. 4% of those who were not at risk.

A look at specific risk factors shows that most of this difference is related to the respondents’ disease status. More than half (58%) of patients with diabetes and 46% of patients with hypertension mentioned these factors compared with 4% of those who did not have diabetes and 7% of those who did not have hypertension. Those with a family history of CKD were no more likely than those who did not to mention disease-related factors.

Respondents with a family history of CKD were more likely to mention family health-related risks. About one-third (32%) of those with a family history of CKD mentioned this in relation to their personal risk assessment, compared with 17% of those who did not have this risk factor. Patients with diabetes and/or hypertension were also more likely than average to mention family health-related risks (21% and 24% respectively).

Patients with diabetes were less likely than those who did not have diabetes to mention water/soda consumption in relation to their personal CKD risk (4% vs. 13%). No other risk factors were associated with this response.

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Those who were at high risk for CKD were less likely to say that general lifestyle and weight-related factors entered their assessment of their personal risk (19% vs. 29%). This response pattern was also seen for the individual variables that comprised the risk rating, viz., diabetes, hypertension, and family history of CKD. At-risk respondents were also less likely to attribute their risk to the presence or absence of symptoms (3% vs. 8%), and, once again, this pattern held for each of the individual risk variables (diabetes, hypertentension, and family risk).

Test StatusThose who were tested for CKD were more likely to give reasons related to their disease status for their self-risk rating (30% vs. 14%). Those who were not tested were more likely to mention family health-related factors (21% vs. 15%).

Knowledge of CKD DefinitionThose who understood what CKD is were more likely to give a disease-related response (26% vs. 15%) and were twice as likely to mention race as a factor (4% vs. 2%).

Reasons for higher-than-average self-risk rating

The reasons given by those who said their risk was higher than average (n=297) are shown in the table below. Hypertension, diabetes, and a family history of CKD were correctly identified most often as reasons for high self-risk ratings.

Reasons For Higher-than-Average Self-Risk Rating(Percent of those who gave a higher-than-average self-risk rating)

Hypertension 33Diabetes 31Family history of kidney disease 22African American race 10Poor diet 5Age (old age) 3Not drinking enough water 2Other (unlisted) reason 14

Reasons given by less than one percent of the sample have not been listed in this table

In addition to these responses, about 5% explicitly said that they did not know why they believed themselves to be at higher risk than average.


Because only about 15% of the total sample regarded themselves at high risk, the sample sizes for many of the demographic and medical sub-groups are too small to yield reliable estimates. Some demographic categories have therefore been combined when reporting the data, or trends are reported with the caveat that they may not be statistically reliable because of the small respondent base.

LocationOn most of the reasons given, however, the sample estimates for the pilot and control sites were very similar and it is likely that population parameters would indicate that there is no difference.

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There were some striking differences among the pilot sites, which are reported here with the caveat that sample sizes were too small to regard these differences as reliable: □ Respondents in Atlanta were almost twice as likely as those in Baltimore to place themselves

at higher risk because they had hypertension (41% vs. 21%) and half as likely to attribute high risk to having diabetes (21% vs. 40%).

□ Atlanta respondents were also much less likely than the mean to attribute high risk to their race (2% vs. the mean of 11% for all four pilot sites and the high of 18% in Cleveland).

□ More respondents in Atlanta and Baltimore attributed their high-risk status to having an unhealthy diet (8% and 7% respectively) compared with those in Jackson and Cleveland (2%). The mean for all pilot sites on this question was 5%.

□ Twice as many people in Baltimore said they were at higher risk because of a family history of kidney disease compared to Atlanta (33% vs. 16%). The mean for all pilot sites on this variable was 23%.

GenderFewer men than women attributed their higher risk status to diabetes (23% vs. 34%). There were no gender-related differences on any other risk factor.

AgeOnce again, the sample sizes in most of the age categories were too small to make any generalizations. However, the trend seems to be that fewer people in the lower age categories see their risk status related to diabetes and hypertension (probably due to the lower prevalence of these two illnesses among younger people) and this proportion rises with respondents’ age. Young people are more likely than older people to attribute their high-risk status to a family history of kidney disease or kidney failure.

Income There was some variation in the estimates based on income, but the sample sizes in the income categories were too small for minor sporadic variation to be regarded as significant. There were, however, a few discernible patterns in the data. The proportion of people who mentioned their race as a factor in their own risk assessment increased with income. Fewer people in the lowest income bracket (under $20K) cited family history as a factor in their risk assessment (7% vs. the sample mean of 22%) and more of them said did not know why they thought of themselves at higher risk (14% vs. the mean of 5%).

EducationOnce again, the sample sizes within education categories were too small to have reliable estimates. Two trends were observed that parallel the variation by income level. One, the proportion of people that placed themselves at higher risk due to a family history of kidney disease, increased with education. Second, people in lower-education categories (like those in the lowest-income category) were more likely to say that they did not know why they thought they were at higher risk.

Risk StatusAs the table below demonstrates, respondents who had some or all of the risk factors for CKD were much more likely to attribute their high risk to diabetes, hypertension, and African- American race, but were less likely than those not at risk to attribute it to family history of CKD.

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Relationship between Reasons for Higher-than-Average Risk Rating and Risk StatusAt Risk for CKD Not at Risk

% that attributed high risk rating to hypertension 44% 4%% that attributed high risk rating to diabetes 43% 1%% that attributed high risk rating to family history of CKD 17% 38%% that attribute high risk rating to African-American race 24% 7%

The sample sizes for individual risk factors were very low and did not yield reliable estimates, but the general pattern was that those with diabetes and hypertension were more likely than those without these illnesses to attribute their higher risk status to these two disease conditions and less likely to attribute their high risk status to a family history of CKD. As one might expect, those with a family history of CKD were more likely than those who did not have such a history to attribute their high risk to this factor.

Attribution of high risk to African-American race also appeared to be related to having diabetes or hypertension, but not to having a family history of CKD.

Test StatusThose who had been tested for CKD were more likely than those that had never been tested to attribute higher risk status to hypertension (44% vs. 20%) and diabetes (39% vs. 23%), and (older) age (4% vs. 2%). They were less likely to attribute risk to a family history of CKD (16% vs. 30%).

Knowledge of CKD DefinitionPeople who could correctly define CKD were somewhat more likely to attribute their high-risk status to hypertension (41% vs. 25%) and/or diabetes (36% vs. 26%).

Reasons for lower-than-average self-risk rating

As the table below illustrates, those who said their risk was lower than average (n= 635) tended to give responses related to having a healthy lifestyle (healthy diet, drinking lots of water, exercise), or to the absence or mitigation of specific risk factors such as diabetes, hypertension, and family history of kidney disease.

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Reasons For Lower-than-Average Self-Risk Rating(Percent of those who gave a lower-than-average self-risk rating)Healthy diet 34Regular exercise 23Drinking lots of water 15No family history of kidney disease 12Generally healthy family 10Have no reason to be at high risk 9Hypertension is controlled 8Have no symptoms 8Diabetes is controlled 4Thin/not overweight 3Not drinking soda/pop 3Take medication regularly 3Spiritual reason 2Other 27Don’t know 6

The base is people who thought they are at lower risk than average.

Responses given by fewer than 1% of respondents are not listed in this table.


Gender There were substantial gender-related differences on some factors which only small proportions of respondents mentioned. More than twice as many women than men reported that their risk is low because their hypertension is well-controlled (10% vs. 4%) or because they had no reason to think they are at risk (11% vs. 4%). Conversely, thrice as many men attributed their lower risk status to well-controlled diabetes (2% vs. 7%) and not drinking soda or pop (6% vs. 2%).

Men were also somewhat more likely than women to ascribe low-risk status to having a healthy diet (41% vs. 32%), exercising regularly (33% vs. 19%), and to drinking lots of water (19% vs. 14%).

AgeThe proportion of people who said they had lower-risk status because they had no reason to think they are at risk decreased steadily with respondents’ age, with 13% in the 30-34 age group saying so compared with 4% in the 55+ age group14. A similar pattern was seen for exercise—36% of people in the 30-34 age group said they are at lower risk because they exercise regularly compared with 13% in the 55+ age group with the middle age categories lying close to the average. People in the lower two age brackets were also slightly more likely to attribute their lower risk status to having a healthy diet compared with those in the upper three age brackets (41% vs. 28%).

The proportion of people who attributed their lower-than-average risk status to having diabetes under control increased with age (from 2% in the 30-34 age group to 6% in the 55+ age group). The proportion of people who attributed their low-risk status to drinking lots of water also rose

14 Due to small sample sizes, estimates in the 55-64 and 65+ age groups have been combined.

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steadily with respondents’ age, with 11% of people in the 30-34 age category mentioning this factor compared with 20% in the 55+ age group. People in the middle and upper age groups were more likely than those in lower age categories to attribute lower risk status to taking their medications regularly.

IncomeThere were few distinct differences by income categories. People in the lower two income categories (less than $40K) were almost twice as likely as those in the upper income categories to say they are at low risk because they have no reason to think they are at high risk (14% vs. 8% for $40K or more). Those with annual household incomes of less than $40K were also more likely than those who had incomes of $40K to attribute lower risk to not drinking soda or pop (7% vs. less than one percent) or taking their medication (4% vs. 2% for other groups), and to say they did not know why they are at lower risk (9% vs. 4%).15

EducationThe proportion of people who said their risk is low because they have a healthy diet increased with education—24% of those with a high school education or less mentioned this factor, compared with 33% of those with some college education or an associate’s degree and 40% of those with a college degree or more.16 Similarly, the proportion of people who attributed lower risk to exercising regularly increased steadily from 15% in the lowest education group (high school or less) to 28% for those with a college degree or more education.

There were also some education-related differences on items on which the total responses were quite low. More people with a high school education or less reported that their risk is low because their diabetes is well-controlled compared to those with some college/Associate’s degree or a college degree or greater (6% vs. 3% and 2%, respectively). Those with a college degree or greater were more likely to report they are at low risk because they are thin (9% vs. 1% for those with high school or less and 3% for those with some college/Associate’s degree) and less likely to attribute their low-risk status to the fact that they have no reason to think they are at risk (5% vs. 11% for the other education categories). Finally, less than one percent of those with a high school education or less reported that their risk is low because their family is healthy, compared with 13% of those who had a college degree and more.

LocationThere were no differences between the pilot and control site samples on the reasons given for self-attribution of lower-than-average risk factors with one exception—people in the pilot sites were twice as likely as those in the control sites to mention lack of family history of CKD as a factor that led them to say their risk is lower than average (14% vs. 7%).

Among the pilot sites, people in Jackson were less likely than others to say they are at lower risk because their family is generally healthy (3% vs. the mean of 10% for all pilot sites).

Risk StatusThose who were at higher risk for CKD were more likely than those who were not to ascribe lower-risk status to well-controlled hypertension (17% vs. 5%), well-controlled diabetes (8% vs. 2%), taking their medication (9% vs. less than one percent), or some spiritual reason (3% vs. 1%). On the other hand, more people who said they were not at risk thought that their risk is low

15 Income categories have been aggregated due to small sample sizes.16 Education categories have been aggregated due to small sample sizes.

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because they are thin/not overweight (4% vs. none of those who were at high risk) or because they have no symptoms (10% vs. 4%).

Almost a quarter (23%) of those with hypertension said their risk is low because their hypertension is well-controlled (compared with 5% of those who did not have hypertension), because they exercise regularly (25% vs. 14%), take their medication (12% vs. 1%) or because they have a healthy diet (37% vs. 21%). Patients with hypertension were less likely than others to say their risk is low because they have no symptoms (4% vs. 9%), because they do not have a family history of CKD (5% vs. 14%), or because they have no reason to think they are at risk (3% vs. 10%).

The sample sizes for two of the three risk factors—diabetes (n=33) and family history (n= 66) for CKD—were too small to yield reliable estimates. However, the general trend was that those with diabetes were more likely to attribute their rating of lower-than-average risk status to well-controlled diabetes, and less likely to attribute it to some other factors such as having no symptoms, drinking lots of water, or having no reason to think they are at high risk. Those who had a family history of CKD were more likely than those who did not have this risk factor to attribute their rating of lower risk to protective factors such as well-controlled diabetes, having a healthy diet, exercising regularly, or a spiritual reason.

Test StatusThere were no substantial differences by test status on most of the risk factors mentioned, with some small exceptions on items for which the overall response was relatively low. People who had not been tested were more likely to attribute their lower risk status to being thin/not overweight (3% vs. 1%), not drinking soda or pop (3% vs. 1%), or because of some spiritual reason (2% vs. 1%).

Knowledge of CKD DefinitionThere was little significant variation by this factor. The only significant differences were that people who understood what CKD is were less likely to attribute low risk to not drinking soda/pop (less than one percent vs. 5%) and more likely to attribute lower risk to some spiritual reason (3% vs. less than one percent for those who do not understand what CKD is).

Reasons for average self-risk rating

The responses given by those who thought they were at average risk (n=930) were quite scattered. A fifth of this category of respondents said they did not know why they thought their risk was average. Even the most common responses— have a healthy diet (11%), controlled hypertension (10%), and family risk (9%)—were only given by about a tenth of respondents. Fewer numbers gave one or more of the remaining listed responses and about 18% gave another (unlisted) reason for their response.

A look at some of the aggregated response options yields somewhat better information. Of the people who rated their risk for CKD as average, 19% mentioned their disease status (either diabetes or hypertension), 18% mentioned general lifestyle or weight-related factors such as diet, exercise and overweight, 17% mentioned their family’s health (either general health or specific history of CKD), and 11% mentioned consumption of water or soda.

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Reasons For Average Self-Risk Rating(Percent of those that gave a higher-than-average self-risk rating)Don’t know why I think so 20Related to disease status 19Related to weight or lifestyle factors 28Related to family’s health 17Related to consumption of soda/pop or water 11Have no reason to think I am at risk 6Have no symptoms 5Other response 18


Gender Fourteen percent of men ascribed their average risk to a disease-related reason compared with 22% of women. Twice as many men as women said that their risk was average because they had no reason to think they are at high risk (10% vs. 4%). Conversely, four times as many women as men rated their risk as average because they take their medication (4% vs. 1%).

AgeThe proportion of respondents who gave a disease-related reason for their average risk status increased steadily with age (from 12% in the 30-34 age category to 32% in the 65+ age group) as did the proportion of those who said their risk is average because they take their medication (no one in the 30-34 age group gave this response while 7% of those in the 65+ age group did). Age was also related to falling proportions of those who ascribed their average risk to their family’s health (26% of 30-34 year-olds, down to 7% of those 65 and older).

IncomeWhile there was some variation in responses based on income, there were no consistent patterns.

EducationPeople with a college education or greater were less likely than others to attribute their average risk status to water or soda consumption (4% vs. 12%).

LocationRespondents at the pilot sites were more likely than those at the control sites to give a disease-related reason for their average risk rating (21% vs. 13%).

There were also some differences among the pilot sites. The proportion of people who gave a reason related to their family’s health ranged from 11% in Cleveland to 26% in Atlanta. Similarly, the proportion that gave a reason related to soda or water consumption ranged from 4% in Baltimore to 15% in Jackson. People in Cleveland were almost twice as likely as those in Baltimore to mention reasons related to lifestyle and weight (23% vs. 17%).

Risk StatusThose who were at risk for CKD were several times more likely to mention disease-related factors as reasons for attribution of average risk (38% vs. 2%). Individual risk factors showed the same trend—47% of people with diabetes and 44% of those with hypertension mentioned

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disease-related factors vs. 16% of those who did not have diabetes and 4% of those who did not have hypertension. Similarly, 27% of those with a family history of CKD mentioned a disease-related factor in assessing their risk as average compared with 19% of those who did not have a family history.

Those who did have a family history of CKD were twice as likely as others to mention family health-related factors in assessing their risk as average (31% vs. 15%). Those with diabetes and hypertension were less likely to mention family health-related factors compared with those who did not have these illnesses (5% and 9% vs. 19% and 22% respectively).

Fewer people who had diabetes attributed their rating of average risk to water or soda consumption (6% vs. 11%). Persons with diabetes were also less likely than those who did not have diabetes to ascribe their average risk status to lifestyle and weight-related factors.

People with hypertension were also less likely than those who did not have these illnesses to attribute their average risk status to the lack of symptoms (1% vs. 7%). Patients with diabetes showed a similar trend but this difference was not statistically reliable (3% vs. 5%).

Though the overall numbers were small, those who had any of the risk factors for CKD were less likely than those who were not at risk to say their risk is average because they have no reason to think they are at higher risk.

Test StatusMore people who had been tested for CKD gave a disease-related reason for their average risk status than those who had not been tested (28% vs. 17%). People who had been tested were also less likely to say they did not know why their risk was average (14% vs. 24%).

Knowledge of CKD DefinitionPeople who knew what CKD is were more likely than those who did not know to give a disease-related reason (26% vs. 13%) or a family health-related reason for their average risk status (21% vs. 13%). They were also a little less likely to say that their risk is average because they do not have reason to think they are at risk (4% vs. 7%) or to say they did not know why their risk status is average (15% vs. 26%).

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7. Screening and Prevention of CKD

Knowledge of Tests for Detection of CKD

Q21: Do you know what kind of tests a person can have to test for kidney disease?

The two most common responses to this question were mentions of a blood test without any further specification (24%) and mentions of a urine test without further specification (23%). These answers, while not incorrect, indicate a relatively vague and undefined sense of what tests are needed. The number of respondents giving more specific answers was far less prevalent: proteinuria or urine protein (1.2% or 24 respondents), creatinine or serum creatinine (1.1% or 23 respondents), microalbuminuria/albumin in urine) (0.2% or 5 respondents), and GFR or Glomerular Filtration Rate (0.2% or 5 respondents).

Fifty-eight percent of the sample did not know or did not remember the type of test used to detect kidney disease. Another two percent gave the incorrect answer “blood pressure test,” and 9 respondents (0.4%) gave the incorrect answer “hemoglobin.” Thus, six of every 10 respondents do not have an even vaguely correct idea of what kind of test is used to detect kidney disease.

The proportion of people who said that blood or urine tests are used to detect kidney disease or mentioned more specific blood and/or urine tests or indicators varied with respondents’ age, income, education, risk status, test status, and knowledge of CKD.


AgeYounger respondents (under 45) were less likely than older respondents to say that a urine test is used to detect CKD (18% as compared to 27%).

IncomePersons in the lowest income category were less likely than those with higher incomes to mention a blood test (17% as compared to 27%). Respondents in the highest income category ($100K or more) were more likely to mention a urine test (33% for those in the $100K+ category as compared to 22% of all others).

EducationSimilarly, those who did not graduate from high school were less likely than others to mention a blood test (16% vs. 26%). Persons who had no more than a high school education were less likely than others to mention “urine test” (18% vs. 25%).

Risk StatusPeople diagnosed with diabetes were more likely to name a correct specific test than those without diabetes (7% compared to 2%). People with a family history of kidney failure were slightly more likely to name a correct test than those with no family history of the disease (4.4% vs. 2.7%). Respondents who had hypertension were somewhat more likely than those without hypertension to mention a general “urine test” (26% compared to 21%).

Test StatusPeople who report having been tested for CKD were only marginally more likely to correctly name a specific kidney disease test (4%, compared to 2% among those not tested). This group,

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however, was more likely than persons not tested to give a generally correct response: 34% said “blood test” compared to 20% of those not tested; 30% said “urine test” compared to 19% of those not previously tested for the disease.

Knowledge of CKD DefinitionSimilarly, persons with a better understanding of kidney disease were more likely to give a correct specific answer (5% compared to 1% who did not know the definition). These individuals were also somewhat more likely to respond “urine test” (26% vs. 20% of those who could not correctly define kidney disease).

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Frequency of Testing for CKD

Q14: Have you ever been tested specifically for kidney disease?

A little more than one-third (36%) of respondents reported having been tested for kidney disease at some time; another 5% could not remember if they have or have not been tested.

The rate of testing differed considerably by population segments.


GenderMen were more likely than women to say they had been tested for CKD (42% compared to 33%).

AgeThe proportion of people who had been tested increased steadily with increasing age, from 23% among 30-34 year-olds to 55% of persons 65 and older.

IncomeThere was no significant relationship between test frequency and income except at the very highest level ($100K or greater), where 52% report having been tested. Among all other income categories, the rate of testing was 35%.

EducationPeople at the highest and lowest ends of the education scale were more likely to have been tested for CKD. About 46% of those who had not completed high school and 45% of those with graduate degrees had been tested, compared to a test rate of 34% in the middle education categories.

Risk StatusPersons having one of the three risk factors were much more likely to have been tested than those with none (47% compared to 26%). Persons with diabetes were more likely to have been tested than persons without diabetes (58% compared to 32%). Those with hypertension were more likely to have been tested than persons without hypertension (51% compared to 28%). This relationship did not hold true for persons with a family history of kidney failure, who had been tested at the same rate as those with no family history of the disease.

Time Since Last Test

Q14a: How recently did you have your last test?

The largest percentage of those tested (42%) said they had the test in the last six months; 21% said it was more than 6 months but less than 12 months ago; 20% said 1-2 years ago; and 15% said their last test was more than 2 years ago.17 How recently one was tested was strongly related to respondents’ age, socioeconomic variables and risk factors.


17 These percentages are computed off the base of those who said they had been tested for CKD (n=710).

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AgePeople in different age categories were about equally likely to have been tested within the past year. However, older respondents who had been tested were more likely than younger respondents to have been tested in the past 6 months (the range is 31% in the youngest age group to 53% in the oldest).

IncomeThe frequency of past-year testing increased among those with annual household incomes of $60K or more. Among those with incomes less than $60K who had been tested, the rate of testing is 59%. This increases to 69% among those with incomes of $60K to less than $80K; and to 79% among those with incomes of $80K to less than $100K; and to 83% among persons in the highest category ($100K or more).

EducationThose with a high school education or less were least likely to be tested in the past year (54%). This rate increases to 65% among those with some college and to 69% among college graduates.

LocationTested respondents living in the control sites were more likely to be tested for kidney disease in the past year than those living in the pilot sites (65% compared to 55%).

Risk StatusPersons at risk for kidney disease were, not surprisingly, more likely to be tested in the past year than those not at risk (67% vs. 57%). Those with diabetes were more likely to be tested than those without diabetes (74% vs. 60%). Those with hypertension were more likely to be tested in the past year than those without hypertension (67% vs. 59%).

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Perception that Kidney Disease is Preventable

Q19: On a scale from 1 to 10, how preventable do you think kidney disease is? In other words, how possible do you think it is to keep from getting kidney disease? A 1 means that kidney disease is not at all preventable and a 10 means that it is completely preventable.

Twelve percent of the sample said they did not know how preventable kidney disease is or refused to answer the question. Of those that did give a response, 45% responded 10, 9, or 8 (perceptions of fairly high preventability); 9% responded 1, 2, or 3 (perceptions of low preventability). The remaining 46% fell in the middle with responses of 3-7. The scale average (mean) was 6.8.

Those with a better understanding of kidney disease, those with greater education, and those with greater income were more inclined to regard kidney disease as preventable.


IncomePersons with the lowest incomes (under $20K) were less likely to see kidney disease as preventable (mean = 6.4) than those with higher incomes. At the higher end of the income range, those with incomes of $80K or more were somewhat more likely to view kidney disease as preventable (mean = 7.3) than those with lower incomes.

EducationThe findings are similar to the breakdown by income: Persons with the least formal education (less than high school graduate) were less likely than others to see kidney disease as preventable (mean = 5.9); those with a college degree or more education were more likely than others to view kidney disease as preventable (mean =7.1).

Knowledge of CKD definitionThose who understood what CKD is tended to see it as more preventable than those who did not (means = 7.0 and 6.6, respectively).

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Perception that Kidney Disease is Treatable

Q20: On a scale from 1 to 10, how treatable do you think kidney disease is? In other words, if you got kidney disease, how possible do you think it is to keep it from getting worse if a person follows their doctor’s advice? A 1 means that kidney disease is not at all treatable and a 10 means that it is completely treatable.

About a tenth of respondents (9%) said they did not know or refused to answer this question. Of those who gave an answer, 57% responded with scale values 10, 9, or 8 (quite treatable), only 5% responded 1, 2, or 3 (not very treatable), and the remaining 39% fell in the mid-range of the scale. Overall, the mean was 7.5.

There was variation on this response based on respondent’s age and education.


AgeThose in the youngest age bracket (30-34) were least likely to view kidney disease as treatable (mean = 7.2). Those in the oldest age category (65+) were most likely to view kidney disease as treatable (mean = 7.7).

EducationPersons with a high school education or less were less likely than others to see kidney disease as treatable (mean = 6.6).

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Knowledge of Steps for Prevention/Treatment

Q22: What advice might a doctor or other health care provider give to someone so they could prevent kidney disease or stop it from getting worse?

The distribution of responses for the total sample is shown in the table below.

Advice to Prevent Kidney Disease or Stop it from Getting Worse

(Percent of Total Sample)Have a healthy diet 34Drink lots of water 27Exercise regularly 15Take prescription medicine 13Control hypertension 12Control diabetes 10Get tested 9Avoid soda 5Lose weight 3Eat less protein 1Avoid medicine (general) 1Avoid headache medicine/aspirin/ analgesics/pain killers/NSAIDs

1

Watch for protein in urine 1Nothing *Don’t know / Don’t remember 33* Less than 0.5%

The most effective ways to prevent the progression of CKD—controlling hypertension, controlling diabetes, being tested, and taking prescription medicines—were mentioned by relatively few respondents.

Respondent education and income and their risk status were associated with knowledge of how kidney disease can be prevented or treated.


AgeA response of “healthy diet” was less likely as age increased. While 46% of the youngest age group (30-34 years of age) mentioned this form of advice, only 24% of persons 65 and older mentioned it. The same was true of regular exercise, mentioned by 19% of the youngest and 7% of the oldest respondents.

Taking medicine was mentioned least by the youngest segment (7%) while getting tested was mentioned least often by the oldest group (5%).

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IncomeHealthy diet and exercise were also mentioned less frequently by those in lower-income groups. Eating a healthy diet was mentioned by 18% of those with annual household incomes of less than $20K compared with the mean of 34% for the whole sample. Less than a tenth (7%) of the people in this group mentioned “regular exercise” as a way of preventing/treating kidney disease compared with the sample mean of 15%. Getting tested for kidney disease was also mentioned least often by the lowest income segment (6%).

The proportion of people who said that controlling diabetes and controlling hypertension help prevent kidney disease or slow its progression rose with income. About 8% of the respondents in the lowest income category gave these responses, compared with 18% of those in the highest income category mentioning controlling diabetes and 23% of respondents in that category mentioning controlling hypertension as a way to check kidney disease.

EducationLike income, education was linked to both diet and exercise. Those with the least education were least likely to mention a healthy diet (13%) and regular exercise (7%) as ways to prevent kidney disease or slow its progression, and this proportion rose incrementally with education level. Similar to the pattern with income, people with more education were also more likely to mention controlling hypertension and diabetes as ways to check the incidence or progression of kidney disease.

Risk StatusPersons with any kidney disease risk factor were more likely than those with no risk factors to mention taking prescribed medicine (16% vs. 10%) and controlling hypertension (14% vs. 9%). They were less likely to mention exercise (13% vs. 17%).

Persons with diabetes mentioned the following more often than those without diabetes: healthy diet (35% vs. 28%), exercise (16% vs. 9%), taking prescribed medicine (19% vs. 12%), controlling diabetes (14% vs. 9%), and controlling hypertension (15% vs. 11%). However, they were less likely to mention getting tested (5% vs. 9%).

Persons with hypertension were more likely than those without hypertension to mention taking one’s prescription medicine (17% vs. 11%) and controlling hypertension (16% vs. 10%). They were less likely to mention exercising regularly (12% vs. 17%).

Test StatusPersons tested for kidney disease were more likely than those not tested to mention taking prescribed medications as a way to prevent or check kidney disease (19% vs. 10%).

Knowledge of CKD DefinitionPersons who understood what kidney disease is were more likely to mention the following methods of preventing or slowing kidney disease: healthy diet (41% vs. 28%), regular exercise (18% vs. 13%), controlling hypertension (15% vs. 9%), and controlling diabetes (13% vs. 7%). Drinking lots of water (an ineffective measure) was also mentioned more often by the more knowledgeable segment (31% vs. 23%).

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9. Patients with Kidney Disease

Prevalence of Kidney Disease

Q13: Kidney disease is a reduction in kidney function. It means that your kidneys are less able to balance fluids in your body, remove waste products from your blood, and release hormones into your blood. Do you have kidney disease as I’ve just described it?

When asked if they had kidney disease as it was just described to them, only 22 respondents, or 1.1% of the sample population, responded that they did.

How CKD was Detected

Q13a: How do you know you have kidney disease?

Of the 22 individuals who had kidney disease, a majority of the respondents (19 individuals) said a doctor or health care provider told them they had kidney disease. One specifically mentioned having a test, and two responded that they found out from another source.

Test Status of Patients

Q13b: Were you tested for kidney disease?

Most of the respondents who had kidney disease (18 of 22) said they had been tested for the disease.

Time Since Last Test

Q13c: How recently did you have your last test?

Of the individuals that had been tested, 12 said they had their last test for kidney disease less than 6 months ago. Two individuals reported they were last tested 6 months to less than 12 months ago, two more said they were tested 1-2 years ago, and three individuals had their last test for kidney disease more than 2 years ago.

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Treatment for CKD

Q13d: How are you being treated for your kidney disease?

When asked how they are being treated for their kidney disease, eight reported they were using medication, six said hemodialysis/dialysis at a center and three respondents said they had made general dietary changes, ten said they were treating it using other means, and two individuals said they did not know and/or did not remember how their illness is being treated.

Compliance with Treatment

Q13e: On a scale from 1 to 10, how well do you think you follow your doctor’s or other health care provider’s recommendations for treating your kidney disease? A 1 means that you do not follow at all what your provider recommends and a 10 means that you do everything as your provider recommends.

Respondents were asked, on a scale of 1 to 10, how well they follow their doctor’s or other health care provider’s recommendations for treating their kidney disease, with 1 meaning they don’t follow the recommendations at all and 10 meaning they do everything that is recommended to them. Most respondents (18 of 22) said they thought they followed their provider’s recommendations fairly well, giving themselves scale ratings of 8 (4 people), 9 (3 people) or 10 (11 people) on a 10-point scale. Two individuals rated themselves at 3 and two gave themselves a rating of 5.

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9. Communicating about Kidney Disease

Past-Year Discussions of Kidney Disease

Q23: Have you discussed kidney disease with anyone in the last year?

Overall, relatively few respondents (23%) reported having talked with anyone about kidney disease in the past year. Those persons with more education, who had been tested for CKD, at risk for CKD (especially persons with a family history of kidney failure or those with diabetes), who understood what kidney disease is, and women were more likely to have had such a discussion.


GenderWomen were somewhat more likely than men to have discussed kidney disease in the past year: 24% as compared with 18%.

EducationRespondents with greater formal education were more likely to have a past-year discussion of kidney disease than those with less; 29% of college graduates reported such a discussion, compared with 23% of those with some college or an associate’s degree, and 18% of those with a high school education or less.

Risk StatusThose with one of the three kidney disease risk factors were more likely to have discussed the disease in the past year (27%) than those not at risk (19%).

In terms of specific risk factors, persons with diabetes were more likely to have discussed kidney disease (32%) than those not diagnosed with diabetes (21%). Persons with a family history were more likely to have discussed the disease (30%) than those without such a history (22%). The relationship is consistent but somewhat less clear-cut among those with hypertension (25% of whom discussed kidney disease in the past year compared with 21% of persons not diagnosed with hypertension).

Test StatusRespondents who had been tested for kidney disease were much more likely to have discussed the disease (34%) than those who had not been tested (16%).

Knowledge of CKD DefinitionRespondents who understood that kidney disease represents a reduction in kidney function were more likely to have discussed it in the last year (28%) than those without this knowledge (18%).

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People with Whom Respondents Discussed Kidney Disease

Q23a: Who did you discuss (kidney disease) with?

Among those who reported having such discussion (n=453), the largest number (39%) said they had had a conversation with a doctor. This corresponds to 9% of the total sample. The remaining responses were as follows: 29% reported having a conversation with a friend or relative (corresponding to 7% of the total sample); 21% said they talked with a friend or relative with kidney disease or kidney failure (5% of the total sample); 11% said they talked with a friend or relative who has diabetes or hypertension (2% of the total sample); 2% mentioned a nurse, pharmacist, or other paraprofessional (less than 1% of the entire sample); and 2% mentioned some other person.

Although the rate of discussion is low in all categories, there were some statistically significant contrasts among the demographic sub-groups. The percentages presented in this section use the total sample as the base (not just the subset who reported having had a discussion).


GenderAltogether, about 3% of women reported having a conversation about kidney disease with a friend or relative with diabetes or hypertension, compared to 1% of men.

EducationPersons with some college or greater were also more likely to have discussed kidney disease with a friend or relative who has diabetes or hypertension than those with no college exposure: 3% compared to 1%. They were also more likely to have discussed it with a friend or relative: 7% compared to 4%.

Risk StatusPersons at risk for CKD were more likely to have discussed the disease with a doctor than those who were not (13% vs. 6%). This was also true for two of the individual risk factors: patients with diabetes were more likely than others to have discussed kidney disease with a doctor (12% vs. 7%) as were those who have a family history of CKD (12% and 8%). Perhaps more revealing than these expected contrasts is the seemingly low rates of past-year discussions with doctors among persons with risk factors.

Test StatusNot surprisingly, those who had been tested for the disease were more likely to have discussed kidney disease with a doctor than those who had not been tested: 15% compared to 5%.

Knowledge of CKD DefinitionRespondents who understood what kidney disease is were more likely to have discussed the disease with a doctor in the last year than those who did not (11% vs. 7%). The knowledgeable group was also: more likely to have discussed kidney disease with the friend or relative (8% compared to 5%), more likely to have discussed it with a friend/relative who has diabetes or hypertension (3% compared to 2%), and more likely to have discussed it with others (3% compared to 1%).

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Content of Kidney Disease Discussions with Health Care Providers

Q23b: What did your health care provider tell you?

As mentioned above, just 9% of the sample had a past-year discussion about kidney disease with a health care provider. The most common advice/information mentioned by this small sample was as follows: to be tested regularly (31 respondents), that they should control diabetes to prevent or control kidney disease (29 respondents), that they should control hypertension to prevent/control kidney disease (27 respondents), that they are at risk (21 respondents), or that they need a change in their medication (12 respondents). Another 83 respondents gave some other (unlisted) response.

The demographic sub-groups are too small for meaningful analysis of discussion content differences.

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Encouraging Others to be Tested

Q26: Have you ever encouraged anyone to get tested for kidney disease?Q26a: Who did you encourage?Q26b: What relative did you encourage?

Fourteen percent of all respondents reported that they had encouraged someone else to be tested for kidney disease.18

The 14% who had encouraged someone else to be tested (281 respondents) were then asked to whom they gave this advice. Most (58%) mentioned a relative, 36% mentioned a friend or co-worker, and 17% of them advised some other individual to be tested. (These figures correspond to 8% of the entire sample who advised a relative to be tested, 5% of the entire sample who advised a friend or co-worker to be tested, and 2% who advised someone else.)

Of the 162 respondents who had encouraged a relative to be tested, 31% gave this advice to a child, 28% to a parent, 21% to a sibling, 9% to a non-blood relative, 6% to a cousin, 4% to an aunt or uncle, 3% to a grandparent, and 10% to some other relative.

The proportion of people who said they had encouraged others to be tested varied with respondent’s age, gender, risk status, and test status. The sample sizes were too small to look at differences in who these people had encouraged to take a test.


GenderWomen were more likely than men to have encouraged others to be tested (16% compared to 10%).

AgePersons 65 and older were more likely than younger respondents to say they had encouraged others to be tested for kidney disease: 20% vs. 14%.

LocationBaltimore stands out from the other pilot sites by having a lower than average number of people who say they encouraged others to be tested: 9% in Baltimore compared to 16% for the combination of the three other locations. The aggregate of the control sites, however, did not differ from the aggregate of the pilot sites on this question.

Risk StatusPersons at risk for CKD were more likely to say they had encouraged others to be tested. Among those with any of the three risk factors, 19% said they had encouraged others to be tested compared with 10% of those who were not at risk. Among persons with hypertension, 18% reported encouraging others to be tested compared with 12% of those without hypertension. Among persons with a family history of the kidney failure, 25% had encouraged someone to be tested compared to 13% of those without a family history of the illness. There is no difference on this measure between persons who had diabetes and those who did not.

18 This figure might over-estimate the true number, as some might be giving the “socially desirable” answer.

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Test StatusPeople who had themselves been tested for kidney disease were more likely to say that they had encouraged others to be tested (23% vs. 9%).

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10. Exposure to Information about Kidney Disease

Past-Year Recall of Kidney Disease-Related Information

Q27: Have you seen, heard or read any information on kidney disease in the last year or so?

Less than one-third of African-Americans (29%) remember seeing, hearing, or reading any information on kidney disease in the past year. This percentage will be one of the baseline measures against which the NKDEP communications campaign will be judged. Importantly for the subsequent evaluation, there were no significant differences across the pilot test sites or between the pilot and control sites on this item. (Awareness was four points higher in the test sites than in the controls – a difference insufficiently large to be statistically significant.)

Not surprisingly, risk factors, knowledge of CKD, and test status were all related to information exposure. Several other demographic factors were also related to responses.


AgePersons 45 and older were somewhat more likely to respond affirmatively that they had seen, heard or read kidney disease information in the past year than those under 45 (31% compared to 25%).

IncomeRespondents with incomes of $80K or more were more likely to have seen, heard or read kidney disease information in the past year than those with incomes less than $80K (34% compared to 28%).

EducationRecall of exposure to kidney disease information was modestly related to education level: Among persons with no college the proportion of those who said they had seen, heard, or read such information was 26%, compared with 28% of those with some college but less than a 4-year degree (28%), and 33% of college graduates (33%).

Risk StatusPersons having any of the three risk factors were slightly more likely to recall exposure to information about kidney disease in the past year than persons with no risk factors (31% compared to 27%). Among those with diabetes, 35% remember seeing, hearing, or reading such information compared to 28% of those without diabetes. For persons with a family history of kidney failure, 37% recall exposure to kidney disease information; for those with no family history, the number is 28%. (The relationship was in the expected direction but not statistically significant for having hypertension versus not having hypertension.)

Test StatusThose tested for the disease were much more likely to remember seeing, hearing, or reading something about it in the past year than those who were not tested (41% compared to 22%).

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Knowledge of CKD DefinitionThirty-four percent of those who understood what kidney disease is remembered seeing, hearing, or reading information about it compared with 24% of those who did not know.

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Sources of Kidney Disease Information

Q27a: Where was this information (on kidney disease)?

Those who reported seeing, hearing, or reading information about kidney disease in the last year (n=577) pointed to the following sources:

Sources of Kidney Disease Information

Source of informationPercent of those

recalling seeing/hearing/readin

g

Percent of all respondents

Doctor’s office 37 11Newspaper or magazine 24 7Brochure 16 5Television 8 2Internet 6 2Dialysis clinic 5 2Education class 3 1Radio 2 1Poster 1 *Other 18 5 * Less than 0.5%

As shown in the table, doctors’ offices were the most common source of information about kidney disease, newspapers or magazines were the second highest source, and brochures were third.

Demographic differences on this response indicate that men and those with less income are more likely to have seen information on kidney disease on the television. In addition to doctors’ offices, older people were most likely to mention newspapers and magazines. Compared to other groups, those with more education were more likely to have seen information on the Internet. Patients with diabetes were also more likely than others to get information from the Internet, while patients with hypertension were more likely to get their information at a doctor’s office.


GenderTelevision and radio were more important sources of kidney disease information for men than for women. For TV, the contrast is 17% versus 4%; for radio, it is 5% versus 1%.

AgeNewspapers and magazines were more typical sources for older respondents (55 or older) than younger ones (31% compared to 22%). This source of information almost equaled doctors’ offices as the most common source for persons 55 and older.

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IncomeTelevision was a more frequent source of kidney disease information for people with incomes less than $60K than for those with higher incomes (10% compared to 3%). This is also true for doctors’ offices (39% for persons with incomes under $60K compared to 26% for persons with incomes of $60K or higher).

EducationTelevision was a less frequent source of kidney disease information for college graduates than for non-graduates (4% compared to 10%). This also applies to brochures: Among college graduates, 10% received information from brochures compared to 20% among non-graduates. And, as one might expect, the Internet was a more common source of information for college graduates than for others (9% compared to 5%).

LocationThe pilot and control site samples were different with regard to use of one information source: Respondents in the control sites were more likely to mention the doctor’s office as their source of kidney disease information: 48% as compared to 35% in the pilot sites.

Risk StatusPersons diagnosed with diabetes were more likely to have received their information from the Internet (13% for patients with diabetes compared to 5% for those not diagnosed with diabetes), and less likely to have received their information from a brochure (9% among patients with diabetes compared to 18% among those not diagnosed). Persons with hypertension were more likely to have obtained information about kidney disease at a doctor’s office than persons without hypertension (45% compared to 34%).

Test StatusPersons not tested for CKD were more likely to get their kidney disease information from the Internet than those who were tested (11% compared to 5%).

Knowledge of CKD DefinitionThose who understood the definition of kidney disease were less likely than those who did not to get their information from a brochure (12% compared to 18%) and also less likely to get information from a doctor’s office (33% compared to 42%).

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Proactive Search for Kidney Disease Information

Q27b: Were you looking for this information or did you just come upon it by chance?

Of the 29% who had seen/heard/read something about kidney disease in the past year (n=577), about three-quarters (72%) said they had come upon the information by chance and 27% said they were looking for it.


GenderWomen were more likely than men to actively seek out information about kidney disease (30% compared to 21%).

EducationCollege graduates tended to actively look for information more often than non-college graduates (32% compared to 25%).

LocationThere were no differences between the pilot and control sites. Respondents in the Atlanta and Jackson pilot sites were more likely to search for kidney disease information (38% and 33%) than those in Cleveland or Baltimore (20% and 19%).

Risk StatusPersons with one or more risk factors were more likely to look for information than those with no risk factors (32% compared to 22%). Those with a family history of CKD were more active in searching for information than persons without a family history (35% compared to 26%).

Test StatusThose who had been tested for kidney disease sought out information more than those who had not been tested (32% vs. 22%).

Knowledge of CDK DefinitionRespondents who understood what kidney disease is were also more likely than others to search for information (32% vs. 21%).

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Awareness of the Message: You have the power to prevent kidney disease

Q27c: Have you seen, heard or read the phrase, “You have the power to prevent kidney disease” in the last year?

One of the key components of the NKDEP communications campaign is the message: You have the power to prevent kidney disease. Theoretically, awareness of this message at baseline, before the campaign begins, should be zero. However, nearly all communications evaluations show some level of message awareness at baseline. It is important to measure this “noise” effect so that post-baseline measures can be compared to the appropriate benchmark and an accurate measure of campaign impact can be derived.

This baseline survey found 14% of all respondents reporting that they had heard or read the campaign message: You have the power to prevent kidney disease. The level of “error” was virtually identical in the composite pilot and control sites: 14% and 15%, respectively. This reassuring outcome implies that whatever misreporting exists is similar in the pilot and control groups.

Although none of the contrasts were large in an absolute sense, there were some statistically significant differences on baseline reporting of having heard/seen the campaign message. Rates of misreporting seem to be somewhat higher among segments for whom kidney disease is a more important topic. This might be due to greater opportunities for confusion among persons processing more information about the disease.


AgePersons under 55 were slightly more likely to say that they heard or read the campaign message than persons 55 and older (15% compared to 12%).

EducationPersons with no college exposure were somewhat less likely to misreport having seen or heard the message than respondents who have had at least some college (12% vs. 16%).

LocationRespondents in the Cleveland pilot site had a slightly higher rate of misreporting than in the mean of the other three: 17% compared to 13%. Respondents in the Baltimore pilot site had a slightly lower rate of misreporting than in the mean of the other three (11% vs. 16%).

Risk StatusPersons with a family history of kidney failure were more likely to say that they saw/heard the message than persons without a family history of kidney failure (18% compared to 14%).

Test StatusPersons who had been tested were more likely to say that they saw/heard the message than persons who had not been tested (18% compared to 12%).

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APPENDIX A: SURVEY QUESTIONNAIRE

Diabetes and Kidney Disease Study

February 10, 2003

Hello, my name is [NAME], and I'm calling on behalf of the National Institutes of Health, a division of the U.S. Department of Health and Human Services. We are calling households in your area to talk to African-American adults about some health issues. The information you provide will be kept confidential, and will not be disclosed to anyone but the researchers conducting the study. Your participation is completely voluntary.

[INTERVIEWER NOTE: IF ASKED, THE SURVEY WILL TAKE 15 – 20 MINUTES]

Would you have some time now to answer these questions?

S1 – 1. Yes2. No [SET CALLBACK, TERMINATE]

Q1 – Are you an African American over the age of 30?

1. Yes2. No [TERMINATE INTERVIEW WITH, “I’M SORRY, I NEED TO SPEAK TO

SOMEONE OVER THE AGE OF 30 WHO IS AFRICAN AMERICAN. THANK YOU”]

9. Ref/DK/NA [TERMINATE INTERVIEW WITH, “I’M SORRY, I NEED TO SPEAK TO SOMEONE OVER THE AGE OF 30 WHO IS AFRICAN AMERICAN. THANK YOU”]

Before we begin with the questions, I must tell you that this survey has been approved by the Office of Management and Budget. Your participation in this survey is completely voluntary—you do not need to answer any questions that you do not wish to answer. At the end of our conversation I will give you some contact information in case you have any questions about this study or about the topics discussed. I also need to let you know that a supervisor may be listening for quality control purposes.

[NOTE TO INTERVIEWER: A lot of these questions are a little technical. Please try to encourage respondents to offer their opinions even if they are not certain of the answer, and ensure that they are not intimidated by the technical nature of the questions.]

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Q2 – As I just mentioned, I’m calling on behalf of the National Institutes of Health and most of my questions today will focus on health issues. Here’s the first question: In your opinion, what are the three most serious health problems facing African Americans today?

[INTERVIEWER NOTE: DO NOT READ RESPONSES, CHOOSE FIRST THREE MENTIONED. PUT INTO PRE-CODED CATEGORIES IF AT ALL POSSIBLE]

[PROGRAMMER NOTE: FIRST THREE RESPONSES NEED TO BE ORDERED]caps inconsistent

1. Access to healthcare2. Accidents3. AIDS/HIV4. Cancer5. Diabetes/Sugar/Sugar diabetes6. Heart disease/stroke/heart attack7. Hypertension/high blood pressure8. Kidney disease/Kidney Failure/End Stage Renal Disease9. Lack of insurance10. Obesity/Overweight11. Poverty12. Violence13. Other [Specify] ______________________14. Don’t know/Don’t remember15. Ref/NA16. Exit

[INTERVIEWER NOTE: KIDNEY STONES, CANCER OR INFECTIONS OF THE KIDNEY ARE NOT KIDNEY DISEASE]

Q3 – As you may know, many African Americans have diabetes or sugar diabetes. If a person does not take care of their diabetes, do you think it is . . .?

[INTERVIEWER NOTE: READ RESPONSES, CHOOSE ONLY ONE]

1. Very likely they will suffer serious negative effects on their health2. Somewhat likely they will suffer serious negative effects on their health3. Likely they will suffer serious negative effects on their health4. Somewhat unlikely they will suffer serious negative effects on their health5. Very unlikely they will suffer serious negative effects on their health6. Don’t know/Don’t remember

9. Ref/NA

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Q4 – Do you have any idea of what these negative effects might be?

[INTERVIEWER NOTE: DO NOT READ RESPONSES, CHOOSE ALL THAT APPLY]

[PROGRAMMER NOTE: YES/NO TOGGLE]

1. Stroke2. Amputation/limb loss3. Premature death/Death4. Heart attack5. Blindness/loss of vision/retinopathy/glaucoma6. Must take insulin7. Kidney disease/Kidney failure/End stage renal disease/dialysis8. Other [Specify] _________________9. Don’t Know/Don’t remember10. Nothing will happen11. Ref/NA12. Exit

[INTERVIEWER NOTE: KIDNEY STONES, CANCER OR INFECTIONS OF THE KIDNEY ARE NOT KIDNEY DISEASE]

Q5 – Do you happen to know what kind of tests a person with diabetes should have regularly?



1. Daily blood glucose/daily monitoring2. Blood test (general)3. Urine test (general)/urinalysis4. Proteinuria/urine protein/protein in the urine5. Hemoglobin A1c/hbA1c/A1c6. Microalbuminuria/albumin in urine7. Creatinine/serum creatinine/creatinine clearance8. GFR/glomerular filtration rate9. Foot/podiatrist exam10. Eye/retinal/retinopathy exam/glaucoma exam/eye pressure test11. Don’t know/Don’t remember12. Ref/NA13. Exit

Q6 – Do you have, or has a doctor or other health care provider ever said you have diabetes?

1. Yes2. No [SKIP TO Q7]3. Don’t know/Don’t remember [SKIP TO Q7]

9. Ref/NA [SKIP TO Q7]

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Q6a – What are you doing to manage your diabetes or keep it under control?



1. Nothing2. Exercise3. Dietary changes4. Weight loss5. Medication6. Insulin injections7. Nutritional or herbal supplements8. Meditation/spiritual intervention9. Alternative therapies10. Other [Specify] ____________________11. Don’t know/Don’t remember12. Ref/ NA13. Exit

Q6b – On a scale from 1 to 10, how well do you think you follow your doctor’s or health care provider’s recommendations for your diabetes? A 1 means you do not follow at all what your provider recommends and a 10 means that you do everything your provider recommends.

1. Do not follow at all2. . . .3. . . .4. . . .5. . . .6. . . .7. . . .8. . . .9. . . .10. Do everything provider recommends11. Does not see a provider12. Don’t know/Don’t remember

99. Ref/ NA

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Q7 – As you may know, many African Americans also have high blood pressure or hypertension. If a person does not take care of their high blood pressure, do you think it is . . .?

[INTERVIEWER NOTE: READ ALL RESPONSES, CHOOSE ONLY ONE]

1. Very likely they will suffer serious negative effects on their health2. Somewhat likely they will suffer serious negative effects on their health3. Likely they will suffer serious negative effects on their health4. Somewhat unlikely they will suffer serious negative effects on their health5. Very unlikely they will suffer serious negative effects on their health6. Don’t know/Don’t remember

9. Ref/ NA

Q8 – Do you have any idea of what these negative effects might be?



1. Stroke2. Amputation/limb loss3. Premature death/Death4. Heart attack5. Kidney disease/kidney failure/end stage renal disease6. Don’t know/Don’t remember7. Nothing8. Other [Specify] _______________________9. Ref/NA10. Exit

Q9 – Do you happen to know what kind of tests a person with high blood pressure or hypertension should have regularly?

[INTERVIEWER NOTE: DO NOT READ RESPONSES, CHOOSE ALL THAT APPLY.]


1. Blood pressure test2. Blood test (general)3. Urine test (general)/urinalysis4. Proteinuria/urine protein/protein in the urine5. Hemoglobin A1c/hbA1c/A1c6. Microalbuminuria/albumin in urine7. Creatinine/serum creatinine/creatinine clearance8. GFR/glomerular filtration rate9. Eye/retinal/retinopathy exam/glaucoma exam/eye pressure test10. Don’t know/Don’t remember11. Ref/NA12. Exit

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Q10 – Do you have, or has a doctor or other health care provider ever said you have, high blood pressure or hypertension?


9. Ref/DK/NA [SKIP TO Q11]

Q10a – What are you doing to keep your high blood pressure or hypertension in control?



1. Nothing2. Exercise3. Dietary changes4. Weight loss5. Medication6. Regular monitoring7. Meditation/spiritual intervention8. Nutritional/herbal supplements9. Alternative therapies10. Staying calm, happy11. Other [Specify] __________________12. Don’t know/Don’t remember13. Ref/ NA14. Exit

Q10b – On a scale from 1 to 10, how well do you think you follow your doctor’s or other health care provider’s recommendations for your hypertension? A 1 means that you do not follow at all what your provider recommends and a 10 means that you do everything your provider recommends.

1. Do not follow at all2. . . . 3. . . .4. . . .5. . . .6. . . .7. . . .8. . . .9. . . .10. Do everything provider recommends11. Does not see a provider12. Don’t know/Don’t remember

99. Ref/ NA

107

Q11 – Have you ever heard of an illness called Kidney Disease?

1. Yes2. No3. Not sure

9. Ref/NA

Q12 – Can you tell me what you think kidney disease is?



1. General disease or ailment of the kidneys2. Kidney stones3. A type of cancer4. An infection of the kidneys5. Stoppage: Kidneys stop working6. Unspecific reduction: Functioning is reduced/Don’t work as well as they should7. Specific reduction: Inability to filter blood of waste, water and/or chemicals8. Has no symptoms9. Has symptoms of some kind (e.g. urinating too much, too little)10. Immediate need for dialysis or a kidney transplant11. Ultimately/eventually leads to kidney failure/dialysis/kidney transplant12. If not treated leads to kidney failure/dialysis/kidney transplant13. Chronic/treatable condition14. Treatment can keep from getting worse15. Can be prevented16. Deadly illness/something that kills you17. Diabetes causes18. Hypertension/high blood pressure causes 19. Family members of people with kidney failure/kidney disease at risk20. African Americans at risk/happens to African Americans21. Other specific race (not African American) at risk/happens to other race22. Older people at risk/happens to older people23. Don’t know/Don’t remember 24. /Ref/NA/Exit

Kidney disease is a reduction in kidney function. It means that your kidneys are less able to balance fluids in your body, remove waste products from your blood, and release hormones into your blood.

108

Q13 – Do you have kidney disease as I’ve just described it?



Q13a – How do you know you have kidney disease?

1. Doctor/health care provider told me2. Have symptoms of it3. Had a test [SKIP TO Q13c]4. Other5. Don’t know/Don’t remember

9. Ref/ NA

Q13b – Were you tested for kidney disease?

1. Yes2. No [SKIP TO Q13d]3. Don’t know/Don’t remember [SKIP TO Q13d]

9. Ref/NA [SKIP TO Q13d]

Q13c – How recently did you have your last test?

1. 1 – less than 6 months ago2. 6 – less than 12 months ago3. 1 – 2 years ago4. More than 2 years ago5. Don’t know/Don’t remember

9. Ref/NA

109

Q13d - How are you being treated for your kidney disease?



1. No treatment2. Exercise3. Dietary changes/general4. Diet with less protein5. Medication6. Hemodialysis/dialysis at a center7. Peritoneal dialysis/home-based dialysis8. Waiting for transplant9. Managing my diabetes10. Managing my hypertension11. Nutritional or herbal supplements12. Alternative therapies13. Meditation/spiritual intervention14. Other15. Don’t know/Don’t remember16. Ref/NA17. Exit

Q13e – On a scale from 1 to 10, how well do you think you follow your doctor’s or other health care provider’s recommendations for treating your kidney disease? A 1 means that you do not follow at all what your provider recommends and a 10 means that you do everything your provider recommends.

1. Do not follow at all2. . . . 3. . . .4. . . .5. . . .6. . . .7. . . .8. . . .9. . . .10. Do everything provider recommends11. Don’t know/Don’t remember

99. Ref/NA

[ALL ANSWERS SKIP TO Q15]

110

Q14 – Have you ever been tested specifically for kidney disease?



[INTERVIEWER: IF RESPONDENT SAYS THEY HAD A PHYSICAL ASK WHETHER THEY KNOW FOR CERTAIN THEY WERE TESTED FOR KIDNEY DISEASE]

Q14a – How recently did you have your last test?

a. 1 – less than 6 months agob. 6 – less than 12 months agoc. 1 – 2 years agod. More than 2 years agoe. Don’t know/Don’t remember

9. Ref/NA

Q15 – Who do you think is more likely to get kidney disease or is at a higher risk for kidney disease?[INTERVIEWER NOTE: DO NOT READ RESPONSES, CHOOSE ALL THAT APPLY][PROGRAMMER NOTE: YES/NO TOGGLE]

1. Persons with diabetes2. Persons with hypertension/high blood pressure3. Family members of kidney disease or kidney failure patients4. African Americans5. Hispanics6. Asians7. Caucasians8. Persons of another race9. Older age people10. Men11. Women12. Overweight or obese people13. People who eat/don’t eat certain foods14. People who drink/don’t drink certain beverages15. People who do not exercise16. People who use/don’t use certain prescription medications17. People who use/don’t use over-the-counter medications18. People who have/don’t have faith19. People with high cholesterol20. People on chemotherapy/receiving cancer treatment21. Other [Specify ____________________]22. Don’t know/Don’t remember23. Ref/NA24. Exit

111

Q15a – Is there anything that would let a person know they had kidney disease?



Q15b– How would someone know they had kidney disease?



1. Would not know2. Get tested/only if tested3. Pain (general)4. Difficulty urinating5. Frequent urination6. Protein in urine7. Swelling/edema8. Fatigue9. Other symptoms; specify: _____________ 10. Doctor would tell them11. Don’t know/Don’t remember12. Ref/NA13. Exit

112

Q16 – Do you happen to know what can cause kidney disease?



1. Overweight/obesity2. Diabetes/sugar diabetes/sugar3. Hypertension/high blood pressure4. Too little water/not drinking enough5. Too much water/drinking too much6. Drinking soda or pop7. Specific prescription medication [Specify___________________]8. Unspecific prescription medication9. Other over-the-counter medicine10. Headache medicines: Tylenol/aspirin, etc.11. Genetics/family risk/family member with kidney failure12. Poor diet13. Poor treatment/doctor’s fault14. Lack of exercise15. Spiritual (God’s will, etc.)16. Other [Specify ______________________]17. Don’t know/Don’t remember18. No answer/Refused19. Exit

Q16a – Have you ever heard that hypertension is one of the leading causes of kidney disease?

1. Yes2. No3. Don’t know/Don’t remember

9. Ref/NA

Q16b – Have you ever heard that diabetes is one of the leading causes of kidney disease?

1. Yes2. No3. Don’t know/Don’t remember

9. Ref/NA

113

Q17 – How would you rate your risk for getting kidney disease? Would you say it is higher than average, lower or about average?

1. Higher2. Lower3. Average4. Don’t know

9. Ref/NA

[PROGRAMMER NOTE: Q17 IS ASKED ONLY IF Q13 > 1. THEN SKIP TO Q18]

Q17a – How would you have rated your risk of getting kidney disease before you got the disease? Did you think it was higher than average, lower or about average?

1. Higher2. Lower3. Average4. Don’t know

9. Ref/NA

[PROGRAMMER NOTE: Q17a IS ASKED ONLY IF Q13 = 1]

114

Q18 – Why do you think so?

[INTERVIEWER NOTE: DO NOT READ RESPONSES, CHOOSE ALL THAT APPLY]1. Have hypertension2. Have hypertension well-controlled3. Have diabetes4. Have diabetes well-controlled5. Am overweight/obese6. Am thin/not overweight7. Have symptoms8. Have no symptoms9. Have no reason to think I am at risk10. Am Black/African American11. Am of specific race (not Black/African American)12. My age (too young)13. My age (too old)14. Have a healthy diet15. Have a poor or unhealthy diet16. Drink lots of water17. Don’t drink enough water18. Drink too much soda or pop19. Don’t drink soda or pop20. Family is healthy21. One or more family members have it/runs in my family (genetic risk for)22. Doesn’t run in my family (no genetic risk for)23. Exercise regularly24. Don’t exercise regularly25. Take my medication26. Don’t take my medication27. Take aspirin/pain medication28. Don’t take aspirin/pain medication29. Take over the counter medicine30. Don’t take over the counter medicine31. Spiritual reason, positive (God looks after me, etc)32. Spiritual reason, negative (God is punishing me, etc)33. I don’t know why I think so34. Other reason [Specify ________________________]35. Ref/NA36. Exit

115

Q19 – On a scale from 1 to 10, how preventable do you think kidney disease is? In other words, how possible do you think it is to keep from getting kidney disease? A 1 means that kidney disease is not at all preventable and a 10 means that it is completely preventable.

1. Not at all preventable2. . . .3. . . .4. . . .5. . . .6. . . .7. . . .8. . . .9. . . .10. Completely preventable11. Don’t know/Don’t remember

99. Ref/NA

Q20 – On a scale from 1 to 10, how treatable do you think kidney disease is? In other words, if you got kidney disease, how possible do you think it is to keep it from getting worse if a person follow their doctor’s advice? A 1 means that kidney disease is not at all treatable and a 10 means that it is completely treatable.

1. Not at all treatable2. . . . 3. . . .4. . . .5. . . .6. . . .7. . . .8. . . .9. . . .10. Completely treatable11. Don’t know/Don’t remember

99. Ref/ NA

116

Q21 – Do you know what kind of tests a person can have to test for kidney disease?



1. Blood pressure test2. Blood test (general)3. Urine test (general)/urinalysis4. Proteinuria/urine protein/protein in the urine5. Hemoglobin A1/hbA1c/A1c6. Microalbuminuria/albumin in urine7. GFR glomerular filtration rate8. Creatinine or serum creatinine/creatinine clearance9. Other [SPECIFY _____________________]10. Don’t know/Don’t remember11. Ref/NA12. Exit

Q22 – What advice might a doctor or other health care provider give to someone so they could prevent kidney disease or stop it from getting worse?



1. Control hypertension2. Control diabetes3. Have a healthy diet4. Drink lots of water5. Eat less protein6. Avoid soda7. Take prescription medicine8. Avoid medicines (general)9. Avoid headache medicine/aspirins/analgesics/pain killers/NSAIDS10. Get tested11. Exercise regularly12. Watch for protein in urine13. Lose weight14. Nothing15. Don’t Know/Don’t remember16. Ref/NA17. Exit

117

Q23 – Have you discussed kidney disease with anyone in the last year?



Q23a – Who did you discuss it with?



1. Doctor2. Paraprofessional—nurse, pharmacist, physician assistant 3. Friend/relative who has diabetes or hypertension 4. Friend/relative or family member with kidney disease or kidney failure 5. Friend/relative (general) 6. Other [Specify ________________________]7. Don’t know/Don’t remember8. Ref/NA9. Exit

[PROGRAMMER NOTE: IF Q23a DOES NOT EQUAL 1 OR 2, SKIP TO Q24]

Q23b – What did your health care provider tell you?



1. Control diabetes to prevent/control kidney disease2. Control hypertension to prevent/control kidney disease3. Medication change needed4. Be tested regularly5. That I am at risk for kidney disease or kidney failure6. That I have the power to prevent kidney disease7. Other [Specify ________________________]8. Don’t know/Don’t remember9. Ref/NA10. Exit

Q24 – Have you ever known anyone with kidney failure? This would be someone who had dialysis or a kidney transplant.

1. Yes2. No [SKIP TO Q24C]3. Don’t know/Don’t remember [SKIP TO Q24C]

9. Ref/NA [SKIP TO Q24C]

118

Q24a – Who did you know with kidney failure?



1. Friend/Coworker 2. Relative 3. Other 4. Don’t know/Don’t remember 5. Ref/NA 6. Exit

[PROGRAMMER NOTE: IF Q24a DOES NOT EQUAL 2, SKIP TO Q24C]

Q24b – What relative had or has kidney disease?



1. Parent2. Grandparent3. Aunt or Uncle4. Sibling5. Child6. Cousin7. Non-blood relative (step or god-parent)8. Other 9. Don’t know/Don’t remember10. Ref/NA11. Exit

Q24c – To what extent do you think having a relative with kidney failure increases a person’s risk for kidney disease? Would you say it increases the risk of kidney disease . . . ?

1. Not at all2. A little3. Somewhat4. A great deal5. Don’t Know

9. Ref/NA

119

Q25 – How common do you think kidney disease is? Would you say it is . . .?

1. Very common2. Somewhat common3. Not common4. Very rare5. Don’t know

9. Ref/NA

Q26 – Have you ever encouraged anyone to get tested for kidney disease?



Q26a – Who did you encourage?



1. Friend/Coworker2. Relative3. Other4. Don’t know/Don’t remember 5. Ref/NA6. Exit

[PROGRAMMER NOTE: IF Q26a DOES NOT EQUAL 2, SKIP TO Q27]

Q26b – What relative did you encourage?



1. Parent2. Grandparent3. Aunt or Uncle4. Sibling5. Child6. Cousin7. Non-blood relative (step or god-parent)8. Other 9. Don’t know/Don’t remember10. Ref/NA11. Exit

120

Q27 – Have you seen, heard or read any information on kidney disease in the last year or so?

1. Yes2. No [SKIP TO Q27c]3. Don’t know/Don’t remember [SKIP TO Q27c]

9. Ref/NA [SKIP TO Q27c]

Q27a – Where was this information?



1. In a newspaper or magazine2. On TV3. On the radio4. A brochure5. A poster6. Education class7. Doctor’s office8. Dialysis clinic9. Internet10. Other 11. Don’t know/don’t remember12. Ref/NA13. Exit

Q27b – Were you looking for this information or did you just come upon it by chance?

1. Looking for the information2. Found it by chance3. Don’t know/don’t remember

9. Ref/DK/NA

Q27c – Have you seen, heard or read the phrase, “You have the power to prevent kidney disease” in the last year?

1. Yes2. No3. Don’t know/don’t remember

10. Ref/NA

121

Now I’d like to ask you a few questions about yourself.

Q28 – Which of the following best describes your age? Would it be . . .?

1. 30 – 342. 35 – 443. 45 – 544. 55 – 645. 65 or older

9. Ref/DK/NA

Q29 – Which of the following best describes your yearly household income? Would it be . . . ?

1. Less than $20,0002. $20,000 – $39,9993. $40,000 - $59,9994. $60,000 - $79,9995. $80,000 - $99,9996. $100,000 or more

9. Ref/DK/NA

Q30 – Which of the following best describes the highest education level you have reached?

[INTERVIEWER NOTE: READ RESPONSES IN ASCENDING ORDER AND ASK INTERVIEWEE TO STOP YOU WHEN YOU REACH THE RIGHT EDUCATION BRACKET.]

1. Less than high school2. High school graduate3. Some college4. Community college graduate (AA degree)5. College graduate (BA degree)6. Some graduate school7. Graduate degree (JD, MD, PhD, etc)

9. Ref/DK/NA

Q31 - What is your zip code?

________

99999 – Ref/DK/NA

[RANGE: 00000 – 99999]

122

Q32 – Code gender

1. Male2. Female

9. Not ascertained

Those are all the questions I have for you today. Thank you for your time and assistance. If you would like additional information about kidney disease I can provide you with some.

Public reporting burden for this survey is estimated to average 20 minutes. An agency may not conduct or sponsor, and a person is not required to respond to, a collections of information unless it displays a currently valid OMB control number. The control number for this survey is 0925-0515 and expires on January 31, 2005. If you have any comments regarding the burden estimate or other aspects of this collection of information, please let me know and I will give you an address where they can be sent.

COMMENTS CAN BE SENT TO:NIH, Project Clearance Branch, ATTN: PRA 0925:05156705 Rockledge Drive, MSC 7974, Bethesda, MD 20892-7974

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Documents

Awareness of CKD as an outcome of