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Dana Robinson, MPH
Project Director
Rollins School of Public Health, Emory University
Dept. of Behavioral Sciences & Health Education
Project A.C.T.S. “About Choices in
Transplantation and Sharing”: An Intervention
increasing donation intentions among African
Americans
CollaboratorsKimberly R. Jacob Arriola, PhD, MPH
Principal Investigator
Nancy J. Thompson, PhD, MPH
Co-Investigator
Jennie P. Perryman, PhD, RN
Co-Investigator
Emily Russell, MPH
Doctoral Student
National Institutes of Health/National Institute of Diabetes and Digestive and Kidney
Diseases
The Importance of Transplantation
� Transplantation is necessary to:
� Save lives
� Extend life
� Improve quality of life
� Healthy People 2020 goals
� Reduce new cases of CKD and its complications, disability, death,
and economic costs
US Transplantation Data (January 1995-December 2011)
5,000
20,000
35,000
50,000
65,000
80,000
95,000
110,000
1995 1998 2001 2004 2007 2010
All Transplant Types
All Donor Types
# on waiting list
WaitlistWaitlist--Kidney OnlyKidney Only
WaitlistWaitlist--All OrgansAll Organs
94% of African
Americans on the
transplant list are
awaiting a kidney!!
Donation and Waitlist Disparities
Why are AAs Disproportionately
Represented?
Glaucoma Hepatitis
Diabetes
Heart Disease
Hypertension Kidney Disease
African Americans’ Reluctance to
Donate
� Research has identified key barriers to donation among AAs
� Lack of knowledge & awareness of the topic
�Religious beliefs and superstitions
� Fear of premature death
�Concerns about race and class-based inequalities
�Distrust of medical community
Our Previous ResearchOur Previous Research
Project ACTS: About Choices in Transplantation & Sharing
� Funded to develop & test a culturally-sensitive intervention that would positively shape AAs views on donation� 5-year study + 1year no cost extension (2002-2008)� N= 425
� 3 key aspects of our study� Culturally-sensitive� Implemented in a religious setting� Emphasis on initiating family discussion
� 2 phases of the project� Phase I: Formative Research� Phase II: Randomized Effectiveness trial
Project ACTS I: Findings
• A greater proportion of the group receiving the Project ACTS intervention viewed donation-related materials• Video: IV 72% vs. Control 28%• Written materials: IV 60% vs. Control 40%
• The intervention group reported increases in readiness to talk with family about organ donation
• Intervention participants moved from preparation to action.
Future Direction. . .
�Significant findings on willingness to talk to family among those who watched and read the intervention materials.
�Unreasonable to expect participants to view donation materials on their own because:�Organ donation is different from other health behaviors
�Limited personal benefit to donors
�Determine effectiveness among non-church recruited participants
Current ResearchCurrent Research
Project ACTS IIIIIIIIIIIIIIII: Overview
� Funded to enhance a previously developed intervention package � 5-year study (2007-2012)
� Randomized effectiveness trial to assess differential impact on behavioral intentions (new vs. previously developed intervention)
� Implementing intervention in Atlanta among non-church recruited AAs
� 2 phases of the project� Phase I: Formative Research
- Modification of intervention materials
� Phase II: Randomized Effectiveness trial
Research Design : Phase IFormative Research
� 8 focus groups (N=59)
� Modifications� New host� Additional living donation information � Youth perspective� Physician presence� Shortened family discussion
� Delivery in a group setting and as a take-home intervention
““ New InterventionNew Intervention ””
Research Design: Phase II
Randomized Effectiveness Trial
� Use of Community Health Advocates (CHAs)
� Demographically similar to target audience
� Recruited by:
� Word of mouth and fliers distributed to community organizations, hospitals, dialysis clinics
� N=26 CHAs
Research Design
CHAs Randomized to 4 Groups (n=26):• Group 1: New intervention- group setting (6)
• Group 2:New intervention- take home (6)
• Group 3: Old intervention – group setting (8)
• Group 4: Old intervention- take home (6)
**Group sessions consisted of:
o 30 minute DVD
o 45 minute discussion
o 20 minute survey
o $15 compensation
11New
Intervention/Group Setting
33Old
Intervention/Group Setting
22New
Intervention/Take Home
44Old
Intervention/Take Home
Data Collection Procedures
BaselineBaseline: RecruitmentRecruitment� Eligibility criteria
� CHAs provided with materials (talking points, flier, personalized letter)
� CHA responsible for 32 participants (6-10/group session)� Project sponsored meal
� Participants completed baseline questionnaire
� 30 minute video + discussion
� $15 monetary incentive
FollowFollow--up: up: One yearOne year� CHA provided with participant contact information
� CHA coordinated follow-up group session� Light snacks
� Participants completed follow-up questionnaire
� $20- $30 monetary incentive
Measures
� Primary independent variable� Condition (new vs. old intervention package)� Delivery Setting (group vs. take-home)
� Main Outcome: Donation intentions, stage of readiness� on one’s driver’s license� on a donor card total donation intentions score� by talking to family
� Transtheoretical model and stages of change� Precontemplation-no intentions to donate� Contemplation-thoughts of becoming a donor� Preparation-seeking out information about donation� Action-expressing donation intentions� Maintenance-expressed intentions > 6 months ago
Statistical Analysis
Overall Analyses� Frequencies
� X² used to determine confounders� Employment status
Main Outcome Analyses� Generalized Estimating Equations (GEE)
� Analysis of repeated measures� Model effects: Intervention package, time, and delivery setting� Primary Outcome variable: recognition of donor status
� Total score summing intentions: license, donor card, talk with family
� Group differences in donation intentions � IV package� Delivery setting
Results: Sample CharacteristicsCharacteristicCharacteristic Intervention PackageIntervention Package pp Delivery Setting Delivery Setting pp
N=509 Old Old InterventionIntervention
New New InterventionIntervention
GroupGroup Take HomeTake Home
Mean age in years (range)Mean age in years (range) 46.2 (19-96) 46.2 (20-80) 44.9 (19-94) 47.6 (18-96) **
Female, %Female, % 67.5 70.7 70.1 68.0
Black/African American, %Black/African American, % 89.7 84.3 83.8 90.3
Married, %Married, % 35.9 43.0 47.3 31.6
Educational Attainment, %Educational Attainment, % ****
<High school<High school 8.0 2.1 3.2 7.0
High school graduate or High school graduate or GED GED
44.6 33.9 40.1 38.6
Completed collegeCompleted college 35.3 48.2 44.4 38.9
Professional degreeProfessional degree 12.1 15.7 12.3 15.4
Employed (full or partEmployed (full or part--time), time), %%
55.8 71.2 **** 68.2 58.5
Income Categories, %Income Categories, % ** **
Up to $29,000Up to $29,000 41.0 28.4 29.3 40
$30,000 to $69,000$30,000 to $69,000 40.0 52.9 52.9 40.7
$70,000 or more$70,000 or more 19.2 17.8 17.8 18.5
Mean stages of change Mean stages of change donation intentions score (SD)donation intentions score (SD)
7.6 (3.6) 8.0 (3.8) 7.8 (3.6) 7.7 (3.8)
Results: Donation Intentions
Donation Intentions TotalDonation Intentions Total(license, donor card, talk to family)(license, donor card, talk to family)
Intervention PackageIntervention Packageaa
(Old vs. New)(Old vs. New)
SettingSettingbb
(Group vs. Take(Group vs. Take--home)home)
ConditionCondition -- .78*
TimeTime(Baseline vs. Follow(Baseline vs. Follow--up) up)
-1.02*** -.52**
Condition Condition XX TimeTime -- -.80**
Only significant unstandardized regression coefficients are presented in this table for the sake of clarity.aAnalyses control for employment statusbAnalyses control for cultural identification, marital status, and employment status***p < .001. **p < .01.*p < .05.
Results:
Don
atio
n In
tent
ions
Delivery SettingDelivery Setting�Group setting demonstrated larger increase in intentions from baseline to follow-up.
Results Summary
Intervention PackageIntervention Package�No significant difference between New and Old Intervention
�Significant effect to time
Results: Summary
Old Intervention vs. New Intervention
Take Home vs. Group Setting
OldOld
Take home
Take homegroupgroup
Conclusions
� Culturally sensitive intervention development targeting AAs is scarce.
� Low donation rates are like a result of negative attitudes
� This study makes an important contribution to the overall field of organ donation and intervention research
Thank you /QuestionsThank you /QuestionsThank you /QuestionsThank you /QuestionsThank you /QuestionsThank you /QuestionsThank you /QuestionsThank you /Questions
Next Steps
Project ACTS II: Increasing Donor Registration among African Americans
Goals are:�To what extent is Project ACTS II effective at increasing registration on the state donor registry?
Project ACTS II: Results� Baseline data collection: April – December 2009
� Follow-up data collection: April 2010 – February 2011
Total Follow-up participation: 509/585 (87%)
ENHANCED INTERVENTION PREVIOUSLY DEVELOPED INTERVENTION
DELIVERED IN
GROUP
SETTING
Group 1:
Baseline N= 135
Follow-up/ N= 132
--------------------------------
98% retention
Group 3:
Baseline N= 153
Follow-up/ N= 130
--------------------------------
85% retention
GIVEN AS A
TAKE-HOME
INTERVENTION
Group 2:
Baseline N= 147
Follow-up/ N= 133
--------------------------------
90% retention
Group 4:
Baseline N= 150
Follow-up/ N= 114
--------------------------------
76% retention