Perceptions of the Chronic Disease Self-Management Program among Low Income African American Women with

Lupus

A Pilot Study

Charmayne M. Dunlop-Thomas, MS, MPH Candidate

• Statement of Problem• Chronic Disease Self-Management

Program• Lupus Pilot Study• Future Implications

Introduction - Overview

Statement of Problem

Lupus – Disease Burden–Morbidity– Quality of Life– Disability– Economy–Mortality

Statement of Problem

MMWR (2002): Trends in Deaths for Lupus U.S. 1979-1998

Systemic lupus erythematosus death rates* among females, by age group & race - U.S. - - 1979-1998

Lupus Interaction

Liu & Davidson (2012) Nature Medicine

Concept of Self-Management

“The ability to make wise choices to achieve a fruitful and joyous life.”

--unknown author

Illustration: Scottish Gov. Living Well Report

Chronic Disease Self-Management Program

Program Intervention

Group-based program• Evidence-based

intervention that improves the health of people with chronic diseases

• Versions– In-Person– Internet

Illustration: African Health Magazine

What are you going to do?

How much will you do?

When will you do this?

How often will you do the activity?

Program Intervention

Goal Settingand

Action Planning

Stress ReductionEmotionsExercise

DietMedicationRelaxation

CommunicationCommunity Resources

Program Intervention

Topics

Pilot Study

Researchers from Emory University want to learn if the chronic disease self-management program could help patients from the Grady Lupus Clinic to improve their quality of life.

• Determine efficacy in lupus patients

• Determine acceptance in our target population of AA women

Pilot Study Population

Pilot Study Recruitment

• African American woman• Age 18 or older• Diagnosed with Lupus• At least 1 active Grady Lupus Clinic

visit in the past 6 months

Illustration: Hello Beautiful Newsletter

Pilot Study Recruitment

Pilot Study Data Collection

Quantitative Measures:• Self-Report pre/post surveys• Healthcare system utilization

Qualitative Measures

Pilot Study Qualitative Measures

Focus Groups

Supplemental Measures:Telephone Leader InterviewsPost-Workshop Satisfaction Survey

Pilot Study Focus Groups

Purpose: insight into acceptability, relevance, and

usefulness

Capturing: satisfaction; valid and applicable aspects to real world experiences

Pilot Study Focus Groups Distribution

Pilot Study Supplemental Measures

Semi-Structured Leader Interviews

Post-Workshop Surveys

Pilot Study Data Analysis

Transcripts

Thematic Analysis

Pilot Study Results

Positive Experience

“Just the motivation and the thrill to see a smile on people faces every week…

enlightens me…we learn and interact with each other.”

Pilot Study Results

Relevant & Relatable

“…the action plan is my life now…”

“The feedback was the best part. It’s nice to be able to talk to somebody who has

[lupus]; somebody to relate to.”

Pilot Study Results

New Skills“If I lay in bed all day I feel miserable, so I

have to really set my mind to get up and do something…the action plan helped out with

that.”

“I also keep my medication list. For instance, I went to the doctor the other day and told the doctor I’m taking too many of this or

that.”

Pilot Study Conclusions

Education

Social Support

Skill Development

• Promising results

• Further Research Study

• Public Awareness

Future Implications

Special Acknowledgements

Principle Investigator: Cristina Drenkard, MD, PhD

CDSMP Leaders:Lynda Conner & Rosalyne King Fulton County Housing and Human Services, Office of Aging

Advisors: Hannah Cooper, ScD and Theresa Brady, PhDQual.Researchers: Terrika Barham, MPH and Natasha Brown, MPH