The Health Literacy Questionnaire: A new approach to measuring

health literacy

Rachelle Buchbinder

NHMRC Practitioner FellowDirector, Monash Dept Clinical Epidemiology, Cabrini Hospital

Professor, Dept. Epidemiology & Preventive Medicine, Monash University

Heath Literacy Network: Crossing Disciplines, Bridging Gap, Sydney, 26 Nov 2013

Where did the term ‘health literacy’ come from?

*Attributed to Scot Simonds 1974:‘…arguing case for school health education with the intention

that pupils would not only be educated in the customary curriculum subjects but might become as literate’in health as they were, for example, in history and science.’

Subsequently acquired a more limited technical meaning:‘…the currency patients need to negotiate a complex health care system” e.g. ability to read and comprehend prescription bottles, appointment slips and other essential health-related materials required to successfully function as a patient’ AMA Council of Scientific Affairs (Selden C, et al NIH, 1999)

*Tones K. Health literacy: new wine in old bottles? Health Educ Res 2002:17:287-90.

Health Literacy: many definitions• “An individual’s overall capacity to obtain, process and

understand basic health information and services needed to make appropriate health decisions” (US Institute of Medicine)

• “The capacity of an individual to obtain, interpret and understand basic health information and services in ways that are health enhancing” (UK National Consumers Council)

• “Health literacy represents the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health” (World Health Organization)

• “Health literacy is the ability to make sound health decisions in the context of everyday life – at home, in the community, at the workplace, the healthcare system, the market place and the political arena” (Kickbusch, 2001)

Why is health literacy important?

• Clinicians/health workers need to know a person’s capacity to process and understand health information to be able to communicate with them effectively

• Policy makers need to understand the community’s capacity to gain access to and understand health information to be able to set appropriate policies, provide appropriate resources

• Researchers need to understand these issues to make correct judgments about research methods, findings etc

• Health literacy is a fundamental element of self-care, and should be considered when developing interventions

How can we assess health literacy?

• Neglected area of clinical training/care

• Routine screening - controversialTakes too longMight embarrass the patientMight stigmatize those with low literacy Might avoid low-literacy patientsClinicians not trained, beyond scope Screening – ?effective intervention Ethical not to?

How can we assess health literacy?

• Ask the patient?• Poor reliability – shame, hide it well

• Educational attainment• Often used as a proxy but poor indicator

• Clinician estimate?• Often wrong (overestimate or underestimate)

Educational attainment?

Larson I, Schumaker HR. Comparison of literacy level of patients in a VA Arthritis Center with the reading level required by educational materials. Arthritis Care Res 1992;5:13-16.

%

Grade

How has health literacy been measured in research studies (that link low health literacy

to poorer health outcomes)?

• Health Literacy has been assessed through measuring reading ability, comprehension and word recognition skills

• 3 key tools used with patients:– Rapid Estimate of Adult Literacy in Medicine

(REALM)– Test of Functional Health Literacy in Adults

(TOFHLA)– Newest Vital Sign

66 words

Rapid Estimate of Adult Literacy in Medicine: REALM

Davis TC, et al. Rapid estimate of literacy levels of adult primary care patients. Fam Med 1991;23:433-5.

Numeracy (17 items)

Parker RM, et al. The Test of Functional Health Literacy in Adults: a new instrument for measuring patients’ literacy skills. J Gen Intern Med 1995;537-41.

Test of Functional Health Literacy in Adults: TOFHLA

Reading comprehension (50 items)

Test of Functional Health Literacy in Adults: TOFHLA

Parker RM, et al. The Test of Functional Health Literacy in Adults: a new instrument for measuring patients’ literacy skills. J Gen Intern Med 1995;537-41.

READ TO SUBJECT: This information is on the back of a container of a pint of ice cream.

QUESTIONS1. If you eat the entire container, how many calories will you eat?

Weiss BD, et al. Quick assessment of literacy in primary care: the newest vital sign. Ann Fam Med 2005;3:51-22.

Answer: 1,000

Newest vital sign (NVS)

Prevalence of low health literacy in Australia

• Application of existing measures of health literacy• Population-based survey of health literacy• Random sample adult population from 2004

electoral roll – 310 participants• Face-to-face interviews• Trained interviewers (n=10)

Barber M, Staples M, Osborne RH, Clerehan R, Elder C, Buchbinder R. Up to a quarter of the population may have suboptimal health literacy: a population-based survey. Health Promotion International 2009; 24:252-261.

Prevalence of low health literacy

REALM (N = 310)

Grade 4-6 May need low-literacy materials; may not be able to read prescription labels

6 (2%)

Grade 7-8 May struggle with most currently available patient education materials

35 (11%)

High school Should be able to read most patient education materials 269 (87%)

TOFHLA (N = 309)

Inadequate May be unable to read and interpret health texts 8 (3%)

Marginal Would have difficulty reading/interpreting health texts 13 (4%)

Adequate Could read and interpret most health texts 288 (93%)

NVS (N = 308)

0-1 Suggests highly likely (50% or more) limited literacy 22 (7%)

2-3 Indicates possibility of limited literacy 58 (19%)

4-6 Almost always indicates adequate literacy 228 (74%)

National survey (NAAL) suggested

that ~60% of Australians have low

health literacy

How well does the REALM perform?

…is a person’s ability to read and pronounce common medical words and lay terms a good measure of health literacy?

Pronunciation versus

definition REALM words

Pronunciation Definition

% Correct%

Correct

%Partially Correct

%Incorrect

Hormones 97 27 40 33

Diabetes* 95 40 38 22

Obesity 92 46 51 3

Arthritis* 99 74 11 16

Osteoporosis 90 73 9 18

* Having the condition not associated with better definitionsBarber M, et al. Up to a quarter of the population may have suboptimal health literacy: a population-based survey. Health Promotion International 2009; 24:252-261.

Pronunciation of words ≠ understanding of words

Elder C, Barber M, Staples M, Osborne RH, Clerehan R, Buchbinder R. Assessing health literacy: A new domain for collaboration between language testers and health professionals. Language Assessment Quarterly 2012;9(3):205-24.

Understanding of words ≠ educational level

Num

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0Pearson Correlation Coefficient = 0.334

Education Level

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Figure 3

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0Pearson Correlation Coefficient = 0.334

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0Pearson Correlation Coefficient = 0.334

Education Level

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Figure 3

Elder C, Barber M, Staples M, Osborne RH, Clerehan R, Buchbinder R. Assessing health literacy: A new domain for collaboration between language testers and health professionals. Language Assessment Quarterly 2012;9(3):205-24.

Jordan J, Osborne R, Buchbinder R. A critical appraisal of the content and psychometric properties of 19 health literacy indices. J Clin Epidemiol 2010

Osborne, Batterham, ElsworthHawkins, Buchbinder BMC Public Health 2013, 13:658.

Steps in questionnaire development

1. Purpose and conceptualisation

2. Draft item development–strict item writing rules, cognitive interviews

3. Administration to a ‘construction sample’

4. Psychometric analysis and refinement –Structural equation modelling–Rasch analysis

5. Administration to a ‘validation sample’

6. Finalization of the tool

7. Develop a web of evidence of the value of the tool in target settings

Purpose of the HLQ

• Generic • Identify potentially modifiable abilities and factors• Capable of detecting a wide range of health literacy

needs of people in the community• Could be used for a variety of purposes

– Descriptive of individual, clinical or whole population

– Evaluative - ie measure response to public health or clinical interventions

Conceptualisation of health literacy

Seeding statement:

“Thinking broadly about your experiences in trying to look after your health, what abilities does a person need to have in order to get, understand, and use health information to make informed decisions about their health?”

Results: concept map (workshop #1)

Scales of the Health literacy QuestionnaireStrongly Agree—Strongly disagree1. Feeling understood and supported

by healthcare providers • I can rely on at least one healthcare provider2. Having sufficient information to

manage my health • I am sure I have all the information I need to

manage my health effectively 3. Actively managing my health• I spend quite a lot of time actively managing my

health 4. Social support for health• I have at least one person who can come to

medical appointments with me 5. Appraisal of health information • When I see new information about health, I

check up on whether it is true or not • I compare health information from different

sources

Cannot do—Very easy6. Ability to actively engage with healthcare providers • Discuss things with healthcare providers until

you understand all you need to 7. Navigating the healthcare system• Work out what is the best care for you • Decide which healthcare provider you need to

see 8. Ability to find good health information• Get health information in words you

understand • Find information about health problems9. Understand health information well enough to know what to do • Read and understand all the information on

medication labels• Understand what healthcare providers are

asking you to do

Breadth and depth

• Each scale is an independent questionnaire and has items that measure a wide range of Health Literacy needs and capabilities

Scales of difficulty…

Find health information from several different places

Find information about health problems

Distribution of scores

Osborne R, Batterham R, Elsworth G, Hawkins M, Buchbinder R. The grounded psychometric development and initial validation of the Health Literacy Questionnaire (HLQ). BMC Public Health 2013; 13: 658.

Healthcare Provider Support

    Difficulty (95% CI)

Ordered Factor Loading (95%CI)

R2

1 I have at least one healthcare provider who knows me well

0.81 (0.77-0.85) Yes 0.84 (0.80-0.8) 0.71

2 I have at least one healthcare provider I can discuss my health problems with

0.90 (0.87-0.93) Yes 0.99 (0.97- 1.01)

0.98

3 I have the healthcare providers I need help me work out what I need to do

0.82 (0.78-0.85) Yes 0.77 (0.72- 0.81)

0.58

4 I can rely on at least one healthcare provider

0.90 (0.87-0.92) Yes 0.91 (0.87- 0.94)

0.82

Model Fit – χ²WLSMV(2) = 10.15, p= 0.0063, CFI = 0.998, TLI = 0.995, RMSEA = 0.100, and WRMR = 0.367.

Composite reliability = 0.88 (0.86-0.90)

Measurement across the full range of the construct through carefully written items

 Ability to Access Health Information

Item Difficulty

1. Find health information from several different places

0.60 Hardest

5. Find information about health problems 0.78 Easiest

40% of people

cannot do this or find it

very difficulty

Measurement across the full range of the construct through carefully written items

 Ability to Access Health Information

Item Difficulty

1. Find health information from several different places

0.60 Hardest

2. Get health information by yourself 0.64

3. Get information about health so you are up to date with the best information

0.70

4. Get health information in words you understand

0.74

5. Find information about health problems 0.78 Easiest

40% of people

cannot do this or find it

very difficulty

Measurement across the full range of the construct through carefully written items

Active engagement with healthcare providers

Item Difficulty

1. Make sure that healthcare providers understand your problems properly

0.72 Hardest

2. Discuss things with healthcare providers until you understand all you need to

0.78

3. Ask healthcare providers questions to get the health information you need

0.78

4. Have good discussions about your health with doctors

0.82

5. Feel able to discuss your health concerns with a healthcare provider

0.86 Easiest

28% of people

cannot do this or have

great difficulty

Psychometrics of HLQ – highly robustScale N items Reliability 1. Feeling understood and supported by healthcare providers 4 0.882. Having sufficient information to manage my health 4 0.883. Actively managing my health 5 0.864. Social support for health 5 0.845. Appraisal of health information 5 0.776. Ability to actively engage with healthcare providers 5 0.907. Navigating the healthcare system 5 0.888. Ability to find good health information 5 0.899. Understand health information well enough to know what to do 5 0.88

Calibration sample N=634 (community health, ED, outpatients)Replication sample N=412 (ED: rural, younger people)

A 9-factor CFA model (44 items) no cross-loadings or correlated residuals allowed. Highly satisfactory: χ2

WLSMV(866 d.f.) = 2927.60, p<0.0000, CFI = 0.936, TLI = 0.930, RMSEA = 0.076, and WRMR = 1.698.

Able to put health as a

priority

Trust in the healthcare system and

health workers

Be supported by family and community

Have physical access to services

Have the energy and strength to

engage

Believe that various health

actions will be worth it

Sense that “health” is worth the

effort

Have “cultural” access to services

Health literacy is much more than literacy

Summary

•Health literacy is much more than literacy•HLQ provides detailed information about health literacy across 9 domains

•Capable of detecting an individual’s health literacy needs

•Might be useful in identifying individual, organisational, policy interventions

•Might change over time•Might be responsive to change