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