The Use of Lay Patient Navigators to Improve Quality of Care and Accrual to Clinical Trials for Radiation Oncology Patients who are Minorities or of Low

The Use of Lay Patient Navigators to Improve Quality of Care and Accrual to Clinical Trials for Radiation Oncology Patients who are Minorities or of Low Socioeconomic Status

ASTROPhiladelphia, Pa.November,2006Principal InvestigatorMichael L. Steinberg, MD, FACRCo-Principal InvestigatorsDavid Huang, MDDavid Khan, MDAllen Fremont, MD, PhDNell Forge, PhDOscar Streeter, MDMack Roach, MD

Profound advances in medical science have contributed to:

Increased longevity Improved quality of life for many Americans. H.Freeman

Despite these advances, some Americans have not fully benefited from this progress - particularly the poor and underserved - as evidenced by their higher cancer incidence and lower survival. H Freeman

Causes of Health DisparitiesFreeman, Adapted from Cancer Epidemiology Biomarkers & Prevention, April 2003PreventionTreatmentPost Treatment/ Quality of LifeSurvival and MortalitySocial InjusticeEarly DetectionDiagnosis/ IncidenceCulturePoverty/ Low Economic Status

Cancer Disparities Research Partnerships ProgramPartnerPatient NavigatorTelesynergyAwardeePt. NavigatorNCI Cancer Center PartnerPatient

Turning the Funding Paradigm Upside Down

Traditional

Regional Comprehensive Cancer Centers

Local Urban/Rural Hospitals Serving Target Populations

All Comprehensive Cancer Centers

Urban/Rural HospitalsServing Target Populations

CDRP

Telemedicine LinkagesMentor Relationship

Cancer Disparities Research Partnership Program (CDRP)5-year grant The program components:Radiation oncology clinical trials infrastructureResearch/Mentoring PartnershipsTelecommunication TELESYNERGY

U.S. MapU.S. MAP

ULAACUrban Latino African American CancerHealth Disparities Project

Centinela Freeman Regional Medical Center

ULAAC OBJECTIVESEstablished the infrastructure to conduct cancer clinical trials Developed a lay patient navigator program primary goals To decrease barriers to receiving cancer care To examine the possibility of increasing voluntary accrual to clinical trials though the function of the lay navigator

CFHS Service Area

Centinela Freeman HealthSystem Service Area

Centinela Freeman Marina Campus

Centinela Freeman Daniel Freeman Campus

Centinela Freeman Centinela Campus

Our Patients

Our PartnersCentinela Freeman

USC

UCSF

RAND

Initial Navigator Concepts Cancer care is a complex and multi-factorial series of interactions with the healthcare system Patient navigators (culturally appropriate personal patient advocates) can facilitate patients through the care process. The concept of a patient navigator and the corresponding literature shows wide variance in definitions and implementation

INITIAL CONSIDERATIONS Lay Navigator program best fit our needs Diversity of ethnicity and language in service area Perceived cost

All patients are offered navigation and continue to receive navigation whether they qualify for or participate in clinical trials

INFRASTRUCTUREOffices/Community Center

Staff:Debbie Karaman, MPH, Community Health EducatorErika Cobb, Administrative AssistantHershel Knapp, PhD, MSWMagdalena Serrano, USC MSW InternNicole Harada, Clinical Trials CoordinatorSusan Richardson, RN, Oncology NurseKeith Andre, MA, Project Administrator

Community Liaison:MABCAB

Abnormal resultsDiagnosisTreatmentConclude NavigationCancer Disparities Research Partnership (CDRP)Patient Navigation Model OutreachPatient NavigationRehabilitationAbnormal ResultsDiagnosisTreatmentAbnormal FindingResolutionConclude NavigationFreeman, et.al., Cancer Practice, 1995.Cancer Diagnosis

LAY NAVIGATOR ROLEThe navigators primary function is guiding cancer patients through the health care systemAssisting with access issuesDeveloping relationships with service providers Tracking interventions and outcomes

RECRUITING AND SCREENING PROSPECTIVE LAY NAVIGATORSCommunity Health Educator Networking:Phone E-mail Community Advisory Board Screening PhoneOrientation Session Prior to Training Motivations

TRAINING COURSE The navigator 6 hour training course over 3 days emphasizes:Investigating and implementing resources for patients in a timely fashionOffering compassionate andnon-judgmental communicationactive listening skillsCompleting appropriate records of all interactions on behalf of patientEmpowering patients toself-advocate in the healthcare realm

Training Program

Chart7

17

14

8

9

Sheet1

African AmericansCaucasiansLatinosAsiansOther

507431

Percentage accepted

LatinosAsiansAfrican AmericansCaucasiansOther

83%67%64%58%50%

Sheet1

Sheet2

TransportationPsychosocialFinancialFear of CancerCaregiverLanguage

6533191187

Group 1Group 2Group 3Group 4

10548

Sheet2

Sheet3

Not interestedSelf sufficientStrong family supportUnable to contactPrevious cancerMedical background

36147521


171489

Active Navigators

Chart5

10

5

4

8

Sheet1


507431

Percentage accepted


83%67%64%58%50%

Sheet1

Sheet2


6533191187


10548

Sheet2

Sheet3

Ethnicity of Active Navigators

Chart8

21

4

1

1

Sheet1


507431

Percentage accepted


83%67%64%58%50%

Sheet1

Sheet2


6533191187


10548

Sheet2

Sheet3


36147521


171489

African AmericansLatinosNative AmericanPacific Islander

21411

Navigators Who Are CancerSurvivors

Chart9

12

2

1

1

1

Sheet1


507431

Percentage accepted


83%67%64%58%50%

Sheet1

Sheet2


6533191187


10548

Sheet2

Sheet3


36147521

BreastProstateEsophagealColonLung

122111


171489

African AmericansLatinosNative AmericanPacific Islander

21411

Patient Navigation Data67% accepted navigation

Chart4

261

172

89

Sheet1

ApproachedAcceptedDeclined

26117289

Sheet1

Sheet2

Sheet3

Ethnicity of Patients ApproachedPercentage Breakdown: 71% African Americans, 13% Latinos, 11% Caucasians, 4% Asians, 1% Other

Chart2

185

34

29

10

3

Sheet1

African AmericansLatinosCaucasiansAsiansOthers

1853429103

Sheet1

Sheet2

Sheet3

Ethnicity of Patients Accepting Navigation

Chart2

0.71

0.7

0.67

0.55

0.33

Sheet1

24/347/10124/18516/291/3

LatinosAsiansAfrican AmericansCaucasiansOthers

71%70%67%55%33%

Sheet1

Sheet2

Sheet3

Reasons for Declining Navigation

Chart6

57

14

10

5

2

1

Sheet1


507431

Percentage accepted


83%67%64%58%50%

Sheet1

Sheet2


6533191187


10548

Sheet2

Sheet3


571410521

ASSESSMENT OF EFFECTIVENESS AND QUALITY ASSURANCENavigators and patients queried multiple times and in various ways during the navigation processAssessments used to modify training and navigation processAssess effectiveness of various components of the program

ASSESSMENT OF EFFECTIVENESS ADDRESSING BARRIERS

Identification of patient specific barriers to careChart and navigation records are audited to determine time to solution of barrier The deficiencies receive follow up by staff and are identified and tracked in a database

Barriers to Care: Chart Audit

6 Most Common Barriers

Chart4

65

33

19

11

8

7

Sheet1


507431

Percentage accepted


83%67%64%58%50%

Sheet1

Sheet2


6533191187

Sheet2

Sheet3

Results of Clinical Trials Accrual 7 Trials Open5 NCI/RTOG Sponsored Trials1 NCIC Sponsored Trial1 Multi-institution device Trial

Trial Enrollment

Chart2

8

6

4

3

1

1

1

Sheet1

African AmericansLatinosCaucasiansAsians

16331

MenWomen

158

P4RTOG 0315RTOG 0321MammoSite DCISRTOG 0413RTOG 9804RTOG 0232

8643111

Sheet1

Sheet2

Sheet3

Accrual to Trial by Ethnicity

Chart3

16

3

3

1

Sheet1

African AmericansLatinosCaucasiansAsians

16331

MenWomen

158

P4RTOG 0315RTOG 321MammoSite DCISRTOG 0413RTOG 9804RTOG 0232

7633211

Sheet1

Sheet2

Sheet3

Clinical Trials Participation(14 month time period)

Chart2

24

17

16

Sheet1

EligibleScreenedEnrolled

241716

Sheet1

Sheet2

Sheet3

Reasons for Non Accrual to Clinical Trial

Chart3

3

1

2

1

1

Sheet1

Preferred Traditional TxScreened/IneligibleDid not feel it was necessaryFelt overwhelmedLack of Support

31211

Sheet1

Sheet2

Sheet3

Clinical Trial Accrual/Navigation

Cancer Post-Treatment Survey

Are there quantitative differences between patients who received navigation versus those who did not in various QOL domains?Are there patient perceived quality of care differences in the two groups?

Cancer Post-Treatment SurveySource:RTOG A-5 Demographic SurveyFACIT and Model QuestionsDomains EvaluatedSpiritualSocial/Family Physical Emotional Functional Patient Centered QuestionsRelationship Based Questions

CONCLUSIONOngoing Evaluation Will Provide Practical Information Regarding Elimination of barriers to care Quality assessment of lay navigation Effects of navigation on accrual to clinical trials

Still Too Separate, Not Yet Equal A. Epstein Most Existing Information On Disparity Focuses OnAbility To Afford CareKnowledge, Beliefs, PreferencesDoctor/Patient RelationshipBach Suggests That Structural Features Of The Delivery System Contribute To Disparity in Quality

Still Too Separate, Not Yet Equal A. Epstein Describing And Explaining Disparities Is Much Easier Than Devising Strategies To Reduce Disparities Researchers Should Shift Focus To Developing Infrastructure and Improving Policies That Will Reduce Disparities

DISEASE EXISTS IN THE CONTEXT OF HUMAN CIRCUMSTANCES WHICH AFFECT THE CARE PROCESS. THESE CIRCUMSTANCES ARE DETERMINANTS CAUSES OF DISPARITY TO ADDRESS THIS PROBLEM THE CDRP WAS FORMED INSTEAD OF AWARDING GRANT TO CCC, GRANTS WERE GIVEN TO COMMUNITY HOSPTIALS SERVING THE TARGET COMMUNITY THE NOTION OF THAT NAVIGATION WOULD BE USEFUL IS BASED ON;1. CANCER CARE IS COMPLEX AND MULTIFACTORIAL2 NAVIGATORS CAN FACILITATE PATIENT THRU THE PROCESS. THERE ARE A VARIETY OF MODELS INCLUDED GUIDING PT THRU SYSTEM, ADDRESS ACCESS ISSUES, DEVELOP RELATIONSHIPS WITH SERVICE PROVIDERS, TRACK INTERVENTIONSUSING COMMUNITY RESOURCES CHS NETWORKS TO GATHER PROSPECTIVE NAVIGATORS THE SCREENS AS TO MOTIVATION AND EXPECTATION INCLUDED TRAINING IN COMMUNITY RESOURCES, ACTIVE LISTENTING SKILLS, MEDICAL RECORD KEEPING, PATIENT SELF ADVOCACY WE HAVE HAD 4 TRAINING PROGRAMS OF THE 48 WHO TOOK THE COURSE 27 WENT ON TO NAVIGATE PATIENTS THE ETHNICITY OF OUR NAVIGATORS MIMICS OUR PATIENT POPULATION 17 NAVIGATORS ARE CANCER SURVIVORS OF THE 261 APPROACHED 172 ACCEPTED NAVIGATION LATINOS ASIANS AND AFRICAN AMERICANS ACCEPTED NAVIGATION AT SIMILAR LEVEL MOST COMMON REASON WAS LACK OF INTEREST VARIOUS QUALITY ASSESSMENT TOOLS WERE USED TO ASSES EFFECTIVNESS OF THE PROGRAM

INCLUDING ASSESMENT OF BARRIERS AND EFFECTIVENESS OF TIMELYNESS OF SOLUTIONS SPREAD SHEETS ADDRESSING BARRIERS ARE REVIEWED WEEKLY FOR EFFICACY OF NAVIGATION PROCESS MOST COMMON BARRIER IN OUR COMMIUNTY IS TRANSPORTATIONTHE RESULT OF CLINCAL TRIAL ACCURAL IN THE FIRST 14 MO WITH TOTAL OF 7 TRIALS OPEN ARE AS FOLLOWSTOTAL OF 23 PTS ENROLLED INTO TRAIL, ONE INTO 2 TRIALS FOR A TOTAL ENROLLEMENT OF 24 ACCRUAL BY ETHNICTY WAS SIMILAR TO PATIENT MIX THERE WERE 24 WHO WERE DEEMED ELEGIBLE FOR THE CLINICAL TRIAL (NON GENOMIC) 17 ACCPETED SCREENING : 71% 16 OR 66% WENT ON TRIAL7 DECLINED ; 1 WAS NOT ELIGIBLE UPON SCREENINGOTHER REASON FOR REFUSING ARE NOTED We are in the process of analyzing our intake data in these patients determine potential benefits of navigation in the processSINCE THERE ARE 2 GROUPS OF PTS NAVIGATED AND NON NAVIGATED WE DEVELOPED ..

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The Use of Lay Patient Navigators to Improve Quality of Care and Accrual to Clinical Trials for Radiation Oncology Patients who are Minorities or of Low