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