older under-served populations across the cancer continuum · older under-served populations across...
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Older Under-served Populations Across the Cancer Continuum
Merle H. Mishel, PhD Barbara Germino PhDBarbara Germino , PhD
The University of North Carolina at Chapel HillThe University of North Carolina at Chapel HillSchool of Nursing
1
Enhancing Recruitment, Retention and Positive Outcomes of African-American Cancer Patients:Experience from Nursing-Intervention Studies
Barriers to Minority Participation
C f t li
In Research
Cancer fatalism
Fear and mistrustFear and mistrust
Costs in money and timeCosts in money and time
Difficult access to research site
Jargon-laden information
Barriers to Minority Participation
L k f it f ili it ith
In Research
Lack of community familiarity with
research
Ethnic, cultural, racial differences
between researchers and potential
subjectssubjects
Recruitment and Retention of African-American Cancer Patients
Psycho-educational intervention: Study # 1 with older Caucasian American and African American Women during TX for BreastAfrican American Women during TX for Breast Cancer.Study # 2 with older Caucasian American andStudy # 2 with older Caucasian American and African-American Men during TX for prostate cancer.Study # 3 with older Caucasian American and African-American women who are long-term breast cancer survivors.
Expanding team’s understanding about African-American'sattitudes towards research
Inclusion of African-American co-Inclusion of African-American co-
investigator
Meetings and consultation with major AA
minister who is a prostate cancer survivor
Focus groups with AA breast cancer
survivors from target communities
Identified collaborative individuals in
Eastern part of the stateEastern part of the state.
Planning recruitment strategies that engage the African-American g gcommunityTargeted regional hospitals with minorityTargeted regional hospitals with minority
physicians as recruitment sites to reduce
social distance
Identified gatekeepers and community allies
through contacts mentioned earlier
Bi-weekly contact with key persons
Hired 2 AA men and one AA woman as
recruiters in the community (additional NIHrecruiters in the community (additional NIH
funding)
Overcoming Distrustg
Face to Face recruitmentFace to Face recruitment•Participant choice for place to discuss recruitment•Recruitment video narrated by well known political or entertainment person. Portable video.
•Minority nurse presents phone recruitment script.•Familiarity with study enhanced by: bus posters; posterswith tear off sheets in beauty parlors, barber shops;community centers; clinics; doctor’s officecommunity centers; clinics; doctor’s office.• Flyers distributed in church.•Announcement on radio stations; on public TVAnnouncement on radio stations; on public TV.
O i Di t t
Targeting Cultural reluctance:
Overcoming Distrust
Targeting Cultural reluctance:
Information booth at AA sororities and at AA Baptist t t tistate convention.
Statewide teleconference hosted by well known AA di i th i f t t i thmen discussing the issue of prostate cancer in the
community . Committing to educational efforts.
Th ti iti id d i f ti t id lThese activities provided information to widelydispersed communities about prostate cancer andour study.
Outcome Measures and Intervention
Modification of outcome measures
Delivery
Modification of outcome measures
Sensitivity to participant's limited incomey p pand resistance to come to study site:
• telephone delivered intervention• home data collection• consistent data collector• intervener matched to subject by• intervener matched to subject by
race and gender
Outcome Measures and Intervention
Resource list designed for participant’s
DeliveryResource list designed for participant s Community.
Intervention not scripted in order topromote more normal flowing interaction.
Management strategies suggested by intervener selected to be withinintervener selected to be within participant’s educational and resource level.
Strategies for Addressing RetentionStrategies for Addressing Retention
Two major approaches: provide participant asTwo major approaches: provide participant as much choice as possible; keep interest alive via novelty.via novelty.
Data collection:Choice by participant within a 2 work windowChoice by participant within a 2 work window. Given 1-800 # to call to change date
Novelty:Novelty: Monthly incentive gifts.
ResultsResults
Attrition rate:Attrition rate:AA women in breast cancer studies:
d i TX 4% i hi 3 8%during TX 4%; survivorship 3.8%.AA men in prostate study: 4.4 % .
Managing Uncertainty in Cancer
Fi diFindings
Major Problems of Men with LocalizedjProstate Cancer
Caucasian African-AmericanCaucasian
• Leaking urine
African-American
• Leaking urine• Erection problems• Communication with
• Communication withhealth care providers
health care providers• General side effects
Fatigue
• General side effects• Erection problems• Fatigue• Fatigue
• Pain• Fatigue• Pain
Major Problems of Women with jBreast Cancer
Caucasian African-American
• FatigueM di l U t i t
African American
• Finances• Medical Uncertainty• Ability to Cope• Implementing self-care
• Fatigue• Implementing self-care behaviorsImplementing self care
behaviors• Treatment Plan
behaviors• Nausea• Expectations about
• Finances• Outcomes from treatment• Co-morbidity
treatment• Pain• Recurrence• Co-morbidity • Recurrence• Skin Changes
Interventions UsedMost Frequently Among Men
African-AmericanCaucasian African American• Provide information on usual trajectory
Caucasian• Provide informationon usual trajectory on usual trajectory
• Promote assertivecommunication
on usual trajectory• Promote assertivecommunication communication
• Provide information tomanage incontinence
communication• Provide information tomanage incontinence manage incontinence
• Encourage a positiveview of situation
manage incontinence• Share experience with
others• Validate self-care
Interventions Used Most FrequentlyAmong Older Women
African-AmericanCaucasian African American
• Provide information
Caucasian
• Provide information• Validate self-care behaviors
o de o at oand resources
• Validate self-care• Encourage vigilance• Put symptoms in
behaviors• Communicate and
treatment context• Reinforce self-
validate views• Clarify expectations
advocacy behaviors
Managing Uncertainty in Breast Cancer
Results of DeliveringResults of Delivering Intervention
Cancer KnowledgeCaucasian and African American Women -Main Effect
Treatment
16
Control
15.5
14.5
15
14
13.5T1 T2 T3
Problem SolvingCaucasian and African American Women -Caucas a a d ca e ca o eMain Effect
Treatment
8.6
Control
8 2
8.4
8
8.2
7.6
7.8
7.6T1 T2 T3
Obtaining Information from PhysicianCaucasian and African American Women -Main Effect
Treatment
4.5
Control
4.4
4.2
4.3
4
4.1
4
T1 T2 T3
Obtaining Information from NurseCaucasian and African American Women -Main Effect
Treatment
4
Control
3 6
3.8
3.4
3.6
3
3.2
T1 T2 T3T1 T2 T3
Number of SymptomsAfrican American Women -African American Women Interaction Effect
Treatment
8
Control
7 4
7.6
7.8
7
7.2
7.4
6.6
6.8
6.4T1 T2 T3
Fatigue (Higher scores = less fatigue)African American Women -Interaction Effect
Treatment
4.8
Control
4.4
4.6
4
4.2
3 4
3.6
3.8
3.4T1 T2 T3
Work and Recreational ActivitiesAfrican American Women -Interaction Effect
Treatment
3 6
3.7Control
3.5
3.6
3 3
3.4
3.2
3.3
T1 T2 T3T1 T2 T3
Managing Uncertainty in Men with Localized Prostate CancerProstate Cancer
Results of Delivering Intervention
Cognitive Reframingg g
TDTS
8 6
8.8ControlTS
8.2
8.4
8.6
7.8
8.0
7 2
7.4
7.6
F(4,456) = 3.81 P <.01
7.2T1 T2 T3
Problem Solvingg
TDTS
8 6
8.8ControlTS
8.2
8.4
8.6
7.8
8.0
7 2
7.4
7.6
F(4,456) = 2.40 P <.05
7.2T1 T2 T3
Control Over Urine Flow
TDTS
4 85
ControlTS
4.4
4.6
4.8
4
4.2
3 4
3.6
3.8
F(2,228) = 3.07 P <.05
3.4T1 T2 T3
Number of Symptoms:African-American
TDTS
7 07.3
ControlTS
6.4
6.7
7.0
5.8
6.1
4 9
5.2
5.5
4.9T1 T2 T3
Number of Symptoms:Caucasian
TDTS
8 38.7
ControlTS
7.5
7.9
8.3
6.7
7.1
5 5
5.9
6.3
5.5T1 T2 T3
Satisfaction with Sexual Functioning:African-American
TDTS
3 03.2
ControlTS
2.6
2.8
3.0
2.2
2.4
1 6
1.8
2.0
1.6T1 T2 T3
Managing Uncertainty in Cancer- Long termBreast Cancer SurvivorsBreast Cancer Survivors
Findings
Occurrence of Triggers byOccurrence of Triggers by Ethnic Group
Trigger Cauc AA• New aches symptom 89% 84%New aches, symptom 89% 84%• Someone else’s cancer 84% 77%
E i l 71% 52%*• Environmental 71% 52%*• Info from media 64% 60%• Doctor appointment 51% 58%• Bca controversy 57% 29%*Bca controversy 57% 29%
Occurrence of Triggers byOccurrence of Triggers by Ethnic Group
Trigger Cauc AATrigger Cauc AA• Annual Mammogram 46% 49 %
N TX id ff 42% 44%• New TX side-effect 42% 44%• Anniversary of diagnosis 36% 34%• Dr. attending to symptom 29% 36%
Occurrence of Symptoms byOccurrence of Symptoms by Ethnic Group
Symptom Cauc AA• Fatigue 84% 82%Fatigue 84% 82%• Joint Stiffness 81% 84%
P i 75% 78%• Pain 75% 78%• Lymphedema 56% 55%• Skin Changes 51% 47%• Hormone/Sexual Changes 43% 40%Hormone/Sexual Changes 43% 40%
M i U t i t i ldManaging Uncertainty in older Long-Term Breast Cancer Survivors
Results of Delivering gIntervention
46
Coping: Self-State:Control vs ExperimentalExperimental
CntlExpl
4 2
4.4Expl
4
4.2
ans
3 6
3.8Mea
3.4
3.6
1 2 3
F=9.46,p<.002
1 2 3 Time
Coping: Catastrophizing for African-American
0 5
CntlExp
0.5
0.4
eans
0.3
Me
0.21 2 3 Time
F=4.49,p<.03
1 2 3 Time
Cognitive Reframing for African-AmericanAmerican
CNTLEXP
8 .6
8 .7EXP
8 .5
8 .6
ans
8 .4Mea
8 .2
8 .3
1 2 3 T ime1 2 3
F=4.84,p<.03
Coping:Diversion for African-American
4 6
ExplCntl
4.4
4.6
4
4.2
Mea
ns
3.6
3.8
M
3.41 2 3 Time
F=7.54,p<.006
Time
Uncertainty for Caucasian
CntlExp
2.63p
2.58
eans
2.53
Me
2.481 2 3 Time
F=6.32,p<.01
1 2 3
Coping: Social Supporrt Satisfaction for Caucasian
CntlExp
5.8Exp
5.7eans
5.7
Me
5.61 2 3 Time
F=4.37,p<.04
1 2 3 Time
Cancer Knowledge: Control vs ExperimentalExperimental
CntlExp
13Exp
12
12.5
eans
11.5
12
Me
111 2 3 Time
F=17.85,p<.0001
1 2 3 Time
Sympton Information : Control vs ExperimentalExperimental
Cntl
Exp
10
11Exp
8
9
eans
56
7Me
4
5
1 2 3 Time
F=85.60 , P<0.0001
Lymphedema Information : Control y pvs Experimental
Cntl
3.5Exp
2.5
3
ans
1.5
2Mea
11 2 3 Time
F=137.65,p<.0001
Growth Through Uncertainty for Af i A iAfrican American
CntlE
4.5Exp
4.4
ans
4.3Mea
4.21 2 3 Ti
F=6.53,p<.01
1 2 3 Time
Growth through Uncertainty Subscale: Greater Flexibility for African AmericanFlexibility for African American
CntlExp
4.6Exp
4 4
4.5
ans
4.3
4.4
Mea
4.2
F=7.11,p<.011 2 3 Time
Growth Through Uncertainty Subscale: New View of Life for African American
Cntl
4.9Exp
4.8
ans
4.6
4.7
Mea
4.51 2 3
F=5.01,p<.03
1 2 3 Time
Funding
Self-help in Breast Cancer and Survivor Breast Cancer studies were funded by the National Cancer InstituteCancer InstituteManaging Uncertainty in Stage B Prostate Cancerfunded by the National Institute of Nursing Research and the National Cancer InstituteResearch and the National Cancer Institute.