Women Empowered to Live With Lupus Study
| Status: | Recruiting |
|---|---|
| Conditions: | Lupus |
| Therapuetic Areas: | Immunology / Infectious Diseases |
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 3/10/2019 |
| Start Date: | January 19, 2017 |
| End Date: | August 2021 |
| Contact: | Charmayne M Dunlop-Thomas, MS, MPH |
| Email: | cmdunlo@emory.edu |
| Phone: | 404-251-8898 |
Women Empowered to Live With Lupus (WELL) Study
The purpose of this research is to examine whether the Chronic Disease Self-management
Program (CDSMP) would improve health outcomes and reduce health care use in African American
women with systemic lupus erythematosus (SLE). The CDSMP is a generic, evidence-based
self-management education program that has been shown to help people with chronic conditions
to take control of their health problems. This study focuses on African American women with
SLE because the CDSMP has not been widely studied in this population.
Program (CDSMP) would improve health outcomes and reduce health care use in African American
women with systemic lupus erythematosus (SLE). The CDSMP is a generic, evidence-based
self-management education program that has been shown to help people with chronic conditions
to take control of their health problems. This study focuses on African American women with
SLE because the CDSMP has not been widely studied in this population.
The CDSMP is an evidence-based, community-based, generic self-management program that
consists of 6 weekly classes of two and a half hours each one, for six weeks. CDSMP classes
are facilitated by certified peer leaders. Because the CDSMP is widely disseminated and
available to the adult U.S. population through community centers, it may be a suitable and
accessible option for African Americans with SLE, even though it is not specifically tailored
to SLE or to African Americans. As the CDSMP has been primarily evaluated in predominantly
white middle-class seniors with more common diseases (e.g. osteoarthritis, diabetes), the
effectiveness of the CDSMP in helping African American women to self-manage SLE is unknown.
This study will examine the effectiveness of the CDSMP to improve patient-reported outcomes
and reduce health care utilization in African American women with lupus. Using a two-group
longitudinal cohort design with participants sampled from a parent population-based SLE
cohort in Georgia, investigators will examine behaviors, health and healthcare outcomes, and
the extent to which individual characteristics modify the effectiveness of the CDSMP.
The Georgians Organized Against Lupus (GOAL), a longitudinal cohort of patients with a
validated diagnosis of SLE, will be used to enroll participants into the intervention. A
random sample of African American women with SLE selected from the parent GOAL cohort will be
recruited into the WELL (Women Empowered to Live with Lupus) cohort. WELL participants will
attend the CDSMP classes in the community, along with people with other chronic illnesses.
WELL participants will be asked to attend the CDSMP in the community and answer
questionnaires at 4 select time periods before and after the program. Investigators will
follow participant's progress for up to 18 months after they attend the CDSMP.
African American women from the GOAL cohort non-selected to be assigned to the intervention
will comprise the usual care group. Participants will continue their longitudinal assessments
as part of the GOAL cohort data collection efforts. Changes in outcomes for up to 18 months
will be compared between WELL participants and the usual care group.
consists of 6 weekly classes of two and a half hours each one, for six weeks. CDSMP classes
are facilitated by certified peer leaders. Because the CDSMP is widely disseminated and
available to the adult U.S. population through community centers, it may be a suitable and
accessible option for African Americans with SLE, even though it is not specifically tailored
to SLE or to African Americans. As the CDSMP has been primarily evaluated in predominantly
white middle-class seniors with more common diseases (e.g. osteoarthritis, diabetes), the
effectiveness of the CDSMP in helping African American women to self-manage SLE is unknown.
This study will examine the effectiveness of the CDSMP to improve patient-reported outcomes
and reduce health care utilization in African American women with lupus. Using a two-group
longitudinal cohort design with participants sampled from a parent population-based SLE
cohort in Georgia, investigators will examine behaviors, health and healthcare outcomes, and
the extent to which individual characteristics modify the effectiveness of the CDSMP.
The Georgians Organized Against Lupus (GOAL), a longitudinal cohort of patients with a
validated diagnosis of SLE, will be used to enroll participants into the intervention. A
random sample of African American women with SLE selected from the parent GOAL cohort will be
recruited into the WELL (Women Empowered to Live with Lupus) cohort. WELL participants will
attend the CDSMP classes in the community, along with people with other chronic illnesses.
WELL participants will be asked to attend the CDSMP in the community and answer
questionnaires at 4 select time periods before and after the program. Investigators will
follow participant's progress for up to 18 months after they attend the CDSMP.
African American women from the GOAL cohort non-selected to be assigned to the intervention
will comprise the usual care group. Participants will continue their longitudinal assessments
as part of the GOAL cohort data collection efforts. Changes in outcomes for up to 18 months
will be compared between WELL participants and the usual care group.
Inclusion Criteria:
- Currently participating in the GOAL study
Exclusion Criteria:
- Participation in the Chronic Disease Self-Management Program (CDSMP) in the past five
years
- Significant cognitive impairment
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