urban latino african american cancer (ulaac) disparities project at centinela freeman regional...
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Urban Latino African American Urban Latino African American Cancer (ULAAC) Disparities Cancer (ULAAC) Disparities
Project Project at Centinela Freeman Regional at Centinela Freeman Regional
Medical CenterMedical Center
Michael L. Steinberg, MD, FACRMichael L. Steinberg, MD, FACRPrincipal InvestigatorPrincipal InvestigatorDavid Khan, MDDavid Khan, MDCo-Principal InvestigatorCo-Principal InvestigatorDavid Huang, MDDavid Huang, MDCo-Principal InvestigatorCo-Principal InvestigatorNicole Harada, CCRCNicole Harada, CCRCClinical Research CoordinatorClinical Research Coordinator
Our TeamOur Team
Principal InvestigatorPrincipal Investigator Michael Steinberg, MDMichael Steinberg, MD
Co-Principal InvestigatorsCo-Principal Investigators David Khan, MD, Radiation Oncologist, CF David Khan, MD, Radiation Oncologist, CF David Huang, MD, Radiation Oncologist, CFDavid Huang, MD, Radiation Oncologist, CF Nell Forge, PhD, MPH, Assoc. Behavioral Scientist, RANDNell Forge, PhD, MPH, Assoc. Behavioral Scientist, RAND Allen Fremont, MD, PhD, Assoc. Natural Scientist, RANDAllen Fremont, MD, PhD, Assoc. Natural Scientist, RAND Oscar Streeter, MD, Radiation Oncologist, USCOscar Streeter, MD, Radiation Oncologist, USC Mack Roach, MD, Radiation Oncologist, UCSFMack Roach, MD, Radiation Oncologist, UCSF
Cancer Disparities Research Cancer Disparities Research Partnership (CDRP) Program Partnership (CDRP) Program
RTOGRTOGToronto, CanadaToronto, Canada
Program UpdateProgram Update
June 2006June 2006
Status of Clinical TrialsStatus of Clinical Trials
7 Trials Open7 Trials Open
5 NCI Sponsored Trials5 NCI Sponsored Trials
1 NCIC Sponsored Trial1 NCIC Sponsored Trial
1 Community-Based Trial1 Community-Based Trial
Trials OpenTrials Open
Name of TrialName of Trial Name of SponsorName of Sponsor
Prostate Patient Profiles Project (PProstate Patient Profiles Project (P44)) Louis Warschaw Prostate Cancer Center @ Louis Warschaw Prostate Cancer Center @ Cedars SinaiCedars Sinai
RTOG 0413RTOG 0413 National Cancer InstituteNational Cancer Institute
RTOG 0232RTOG 0232 National Cancer InstituteNational Cancer Institute
RTOG 0321RTOG 0321 National Cancer InstituteNational Cancer Institute
NCIC CTG MA.20NCIC CTG MA.20 National Cancer Institute of CanadaNational Cancer Institute of Canada
RTOG 98-04RTOG 98-04 National Cancer InstituteNational Cancer Institute
RTOG 0315RTOG 0315 National Cancer InstituteNational Cancer Institute
Trials Pending Approval Trials Pending Approval by WIRBby WIRB
Cancer Post Treatment Survey – Cancer Post Treatment Survey – ExemptionExemption
Rand/ULAAC Patient Navigator Survey – Rand/ULAAC Patient Navigator Survey – In progressIn progress
RTOG 0123 – RTOG 0123 – In progressIn progress
RTOG 0214 – RTOG 0214 – In progressIn progress
RTOG 0116 – RTOG 0116 – In progressIn progress
S0424 – S0424 – In progressIn progress
Trials AccruedTrials Accrued
8
6
4
21 1 1
0
12
34
56
78
9
P4 RTOG 0315 RTOG 0321 MammoSiteDCIS
RTOG 0413 RTOG 9804 RTOG 0232
Accrual to Trial by Accrual to Trial by EthnicityEthnicity
16
3 3
1
0
2
4
6
8
10
12
14
16
18
African Americans Latinos Caucasians Asians
Accrual to Trial by Accrual to Trial by GenderGender
15
8
0
2
4
6
8
10
12
14
16
Men Women
Accrual to Trial by Accrual to Trial by ResidenceResidence
14
4
1 1 1 1 1
0
2
4
6
8
10
12
14
16
Los Angeles Inglew ood Gardena Torrance Culv er City Marina Del
Rey
Sun City
Los Angeles (90008 – 90047) Inglewood (90301 – 90305) Gardena (90249)
Torrance (90250) Culver City (90230) Marina Del Rey (90292)
Sun City (92586)
Clinical Trials – NCI & Clinical Trials – NCI & Device SponsoredDevice Sponsored
24
1715
0
5
10
15
20
25
30
Eligible Screened Enrolled
Reasons for declining clinical Reasons for declining clinical trialtrial
3
2 2
1 1
0
0.5
1
1.5
2
2.5
3
3.5
Preferred TraditionalTx
Screened/Ineligible Did not feel it wasnecessary
Felt overwhelmed Lack of Support
Publications and Publications and Presentations Presentations
““Implementing a Lay Patient Navigator Program to Reduce Barriers for Implementing a Lay Patient Navigator Program to Reduce Barriers for Minority Patients’ Access to Cancer Care and Clinical Trials: Essential Minority Patients’ Access to Cancer Care and Clinical Trials: Essential Steps and Initial Challenges”Steps and Initial Challenges”
Manuscript resubmittedManuscript resubmitted
““National Leadership Summit on Eliminating Racial Disparities in Health”National Leadership Summit on Eliminating Racial Disparities in Health”
January 9-11, 2006, Washington, D.CJanuary 9-11, 2006, Washington, D.C..
““Prophylactic Post-Operative Antibiotics for Prostate BrachytherapyProphylactic Post-Operative Antibiotics for Prostate Brachytherapy””
Presented at the 2006 ASCO Prostate Cancer SymposiumPresented at the 2006 ASCO Prostate Cancer Symposium
Publications and Publications and Presentations Presentations
““Developing a Lay Patient Navigator Program Addressing Barriers to Developing a Lay Patient Navigator Program Addressing Barriers to Care and Participation in Clinical Trials”Care and Participation in Clinical Trials”
Presented at the REACH 2010 Conference, May 17, 2006Presented at the REACH 2010 Conference, May 17, 2006
““Preliminary Results and Evaluation of MammoSite® Balloon Preliminary Results and Evaluation of MammoSite® Balloon Brachytherapy for Partial Breast Irradiation for Pure Ductal Brachytherapy for Partial Breast Irradiation for Pure Ductal Carcinoma in Situ: A Phase II Clinical StudyCarcinoma in Situ: A Phase II Clinical Study ”” Presented at the American Society of Breast Surgeons Meeting, April 2006Presented at the American Society of Breast Surgeons Meeting, April 2006
““Using Telesynergy® to Improve Access to Clinical Trials at an Using Telesynergy® to Improve Access to Clinical Trials at an Underserved Community Based HospitalUnderserved Community Based Hospital””
Submitted to ASTRO, November 2006Submitted to ASTRO, November 2006
Publications and Publications and PresentationsPresentations
A Lay Patient Navigator Program as Part of a Clinical Trials A Lay Patient Navigator Program as Part of a Clinical Trials Infrastructure in a Community Hospital Serving Minority and Low Infrastructure in a Community Hospital Serving Minority and Low Income Patients Income Patients Submitted to Cancer Health Disparities Summit 2006, Bethesda, MD, Submitted to Cancer Health Disparities Summit 2006, Bethesda, MD, July 17-19, 2006July 17-19, 2006
The Use of Lay Patient Navigators to Improve Quality of Care and The Use of Lay Patient Navigators to Improve Quality of Care and Accrual to Clinical Trials for Radiation Oncology Patients Who Are Accrual to Clinical Trials for Radiation Oncology Patients Who Are Minorities or of Low Socioeconomic StatusMinorities or of Low Socioeconomic Status Accepted for oral presentation at ASTRO 2006, Philadelphia, PA, Accepted for oral presentation at ASTRO 2006, Philadelphia, PA, Nov. 5-9, 2006Nov. 5-9, 2006
The Urban Latino African American Cancer (ULAAC) Disparities The Urban Latino African American Cancer (ULAAC) Disparities Project: Implementing the NCI-Radiation Research Program ModelProject: Implementing the NCI-Radiation Research Program Model Cancer in African Americans - Challenges and Opportunities the Cleveland Cancer in African Americans - Challenges and Opportunities the Cleveland
Clinic Taussig Cancer Center, May 11-13, 2006Clinic Taussig Cancer Center, May 11-13, 2006
Update on Partnership Update on Partnership RelationsRelations
Centinela Freeman Centinela Freeman
USCUSC
UCSFUCSF
RANDRAND
USC/Norris Cancer Comprehensive USC/Norris Cancer Comprehensive CenterCenter
Mentoring InstitutionMentoring Institution Guidance and oversight in clinical trial infrastructure Guidance and oversight in clinical trial infrastructure
Collaboration of clinical trialsCollaboration of clinical trials
MammoSite DCIS Trial (completed)MammoSite DCIS Trial (completed)
P53 Trial ( in development )P53 Trial ( in development )
High Risk Prostate Cancer ( in development )High Risk Prostate Cancer ( in development )
Collaboration of tumor boards and case conferencesCollaboration of tumor boards and case conferences
Weekly combined tumor boardsWeekly combined tumor boards
Cancer Disparities Research Cancer Disparities Research Partnership (CDRP) ProgramPartnership (CDRP) Program
RTOGRTOGToronto, CanadaToronto, Canada
Process Evaluation: Process Evaluation: OverviewOverview
RAND CorporationRAND Corporation
Overview of RAND ActivitiesOverview of RAND Activities
Navigator focus groupsNavigator focus groups Development of patient surveys and Development of patient surveys and
interview protocolsinterview protocols Fostering research opportunities Fostering research opportunities
(e.g. ACTION)(e.g. ACTION) Assistance on manuscriptsAssistance on manuscripts Provider and staff interviewsProvider and staff interviews
Process EvaluationProcess Evaluation
Assess whether the project’s goals Assess whether the project’s goals and objectives have been and objectives have been operationalized and implemented as operationalized and implemented as intended.intended.
Identify areas where adjustments Identify areas where adjustments are needed to increase the are needed to increase the program’s effectiveness and program’s effectiveness and efficiency. efficiency.
Process Evaluation: Process Evaluation: Methods and Methods and StakeholdersStakeholders
Focus GroupsFocus Groups Patient NavigatorsPatient Navigators
Face to Face InterviewsFace to Face Interviews PatientsPatients
Semi-Structured InterviewsSemi-Structured Interviews Community ProvidersCommunity Providers DFMH/ULAAC StaffDFMH/ULAAC Staff
Focus Group Sessions:Focus Group Sessions:Content AreasContent Areas
Patient NavigatorPatient Navigator RoleRole MotivationMotivation SkillsSkills
NeedsNeeds PatientPatient Navigator TrainingNavigator Training
Clinical TrialsClinical Trials PerceptionsPerceptions
Patient Instrument:Patient Instrument:Key DomainsKey Domains
Patient Needs and BarriersPatient Needs and Barriers Perceived SatisfactionPerceived Satisfaction
Navigator SupportNavigator Support Provider CareProvider Care
Self-Efficacy Self-Efficacy Cancer knowledgeCancer knowledge EmpowermentEmpowerment
Update on Update on Telesynergy/TelemedicineTelesynergy/Telemedicine Tumor BoardsTumor Boards
USC – Every MondayUSC – Every Monday CFHS – Every WednesdayCFHS – Every Wednesday
Training SessionsTraining Sessions ULAAC Navigator Training ProgramsULAAC Navigator Training Programs
MeetingsMeetings Investigator Meeting – QuarterlyInvestigator Meeting – Quarterly Medical Advisory Board – QuarterlyMedical Advisory Board – Quarterly ULAAC – Every WednesdayULAAC – Every Wednesday Increased participation with mentoring institutionsIncreased participation with mentoring institutions Increased participation with CDRP sitesIncreased participation with CDRP sites
Clinical TrialsClinical Trials Collaboration with other CDRP sitesCollaboration with other CDRP sites Patient consent (Speaking)Patient consent (Speaking)
Abstract submitted to ASTROAbstract submitted to ASTRO
Cancer Disparities Research Cancer Disparities Research Partnership (CDRP) ProgramPartnership (CDRP) Program
RTOGRTOG
Toronto, CanadaToronto, Canada
Patient Navigator Patient Navigator ProgramProgram
Training ProgramTraining Program
17
14
89
0
2
4
6
8
10
12
14
16
18
Group 1 Group 2 Group 3 Group 4
Active NavigatorsActive Navigators
10
54
8
0
2
4
6
8
10
12
Group 1 Group 2 Group 3 Group 4
Ethnicity of Active Ethnicity of Active NavigatorsNavigators
21
4
1 1
0
5
10
15
20
25
African Americans Latinos Native American Pacific Islander
Navigators Who Are CancerNavigators Who Are CancerSurvivorsSurvivors
12
21 1 1
0
2
4
6
8
10
12
14
Breast Prostate Esophageal Colon Lung
Patient Navigation DataPatient Navigation Data
261
172
89
0
50
100
150
200
250
300
Approached Accepted Declined
67% accepted navigation
Ethnicity of Patients Ethnicity of Patients ApproachedApproached
185
34 2910 3
02040
6080
100120140
160180200
AfricanAmericans
Latinos Caucasians Asians Others
Percentage Breakdown:
71% African Americans, 13% Latinos, 11% Caucasians, 4% Asians, 1% Other
Ethnicity of Patients Accepting Ethnicity of Patients Accepting NavigationNavigation
124
2416
71
0
20
40
60
80
100
120
140
AfricanAmericans
Latinos Caucasians Asians Others
Percentage Breakdown:
67% African Americans, 71% Latinos, 55% Caucasians, 70% Asians, 33% Other
Ethnicity of Patients Declining Ethnicity of Patients Declining NavigationNavigation
61
1310
3 20
10
20
30
40
50
60
70
AfricanAmericans
Caucasians Latinos Asians Other
Reasons for Declining Reasons for Declining NavigationNavigation
57
1410
52 1
0
10
20
30
40
50
60
Not interested Self suff icient Strong familysupport
Unable tocontact
Previouscancer
Medicalbackground
6 Most Common Barriers6 Most Common Barriers
65
33
19
118 7
0
10
20
30
40
50
60
70
Transportation Psychosocial Financial Fear of Cancer Caregiver Language
Solutions for BarriersSolutions for Barriers TransportationTransportation
Taxi vouchers Taxi vouchers Variety of van services to accommodate patients with special Variety of van services to accommodate patients with special
needsneeds Work with patients’ insurance carrier to provide transportationWork with patients’ insurance carrier to provide transportation Navigators who are willing to drive patients to and from Navigators who are willing to drive patients to and from
treatmenttreatment PsychosocialPsychosocial
Match patients with navigators who are cancer survivors Match patients with navigators who are cancer survivors (matching type of cancer when possible)(matching type of cancer when possible)
Increase frequency of comfort callsIncrease frequency of comfort calls Referral to patient/family support groups and/or counselingReferral to patient/family support groups and/or counseling
FinancialFinancial Financial assistance organizations Financial assistance organizations Food vouchersFood vouchers Salvation Army and Catholic CharitiesSalvation Army and Catholic Charities Utilities assistanceUtilities assistance Housing assistance and referralHousing assistance and referral
Solutions for BarriersSolutions for Barriers Fear of CancerFear of Cancer
Provide linguistically appropriate, cancer-specific educational Provide linguistically appropriate, cancer-specific educational materialsmaterials
Accompany patients to cancer-related medical visitsAccompany patients to cancer-related medical visits Encourage support group participationEncourage support group participation
CaregiverCaregiver Referral to In Home Supportive Services Referral to In Home Supportive Services Referral to Multipurpose Senior Services Program Referral to Multipurpose Senior Services Program Referral to Comfort Keepers Referral to Comfort Keepers
LanguageLanguage Assign navigators who are culturally and linguistically Assign navigators who are culturally and linguistically
appropriateappropriate Make sure translator is available at patients’ appointmentsMake sure translator is available at patients’ appointments ALAS Para tu SaludALAS Para tu Salud – a translation program based in Los – a translation program based in Los
Angeles, CA Angeles, CA
Cancer Post-Treatment SurveyCancer Post-Treatment Survey
Study Questions:Study Questions:
1.1. Are there quantitative differences Are there quantitative differences
between patients who received between patients who received
navigation versus those who did not in navigation versus those who did not in
various QOL domains?various QOL domains?
2.2. Are there patient perceived quality Are there patient perceived quality
differences in the two groups?differences in the two groups?
Cancer Post-Treatment SurveyCancer Post-Treatment Survey
Source:Source:
RTOG A-5 Demographic SurveyRTOG A-5 Demographic Survey
FACIT and Model QuestionsFACIT and Model Questions
Domains EvaluatedDomains Evaluated
SpiritualSpiritual
Social/Family Social/Family
Physical Physical
Emotional Emotional
Functional Functional
Patient Centered QuestionsPatient Centered Questions
Relationship Based QuestionsRelationship Based Questions
Cancer Disparities Research Cancer Disparities Research Partnership (CDRP) ProgramPartnership (CDRP) Program
RTOGRTOGToronto, CanadaToronto, Canada
Milestones Milestones and and
Lessons Learned Lessons Learned
ULAAC Access DatabaseULAAC Access Database
ULAAC Access Database –Cancer ULAAC Access Database –Cancer Post Treatment SurveyPost Treatment Survey
Quality Assurance Patient Quality Assurance Patient Evaluation of Navigator Evaluation of Navigator
Services Structured InterviewServices Structured Interview
Centinela Freeman Centinela Freeman Community FoundationCommunity Foundation
Established Community Health FoundationEstablished Community Health Foundation Mission: Establish Infrastructure to Support Access Mission: Establish Infrastructure to Support Access
to Care and Clinical Research in the Communityto Care and Clinical Research in the Community Current ActivitiesCurrent Activities
Recruited Executive Director Recruited Executive Director Diabetes Screening and Care/Navigator ProgramDiabetes Screening and Care/Navigator Program High School Sports Trainer FundingHigh School Sports Trainer Funding Centinela Freeman Research Institute Centinela Freeman Research Institute Nursing Academy Nursing Academy
Trains 72 RNs per yearTrains 72 RNs per year
MSW Intern’s RoleMSW Intern’s Role Provided navigationProvided navigation Conducted various in-services for navigators (basic Conducted various in-services for navigators (basic
training/orientation, self disclosure guidelines)training/orientation, self disclosure guidelines) Developed prototype Patient Tracking Notebook Developed prototype Patient Tracking Notebook Built resource guide for navigatorsBuilt resource guide for navigators Laid groundwork for Latino Cancer Support Group Laid groundwork for Latino Cancer Support Group
Spanish Spanish
Lessons Learned Lessons Learned
It takes 15 months to start navigating patients It takes 15 months to start navigating patients
It takes at least 1 year to gather enough data for It takes at least 1 year to gather enough data for analysis of navigation analysis of navigation
It takes 18 months to start clinical trialsIt takes 18 months to start clinical trials
Clinical trials applicable to our institution and patient Clinical trials applicable to our institution and patient population are not plentiful population are not plentiful
Community hospital infrastructure was not initially Community hospital infrastructure was not initially conducive to grant support…we had to create our conducive to grant support…we had to create our ownown