Systemic lupus erythematosus (SLE or lupus) is a chronic autoimmune disease that is associated with increased morbidity, mortality, healthcare costs and decreased quality of life. These domains have included issues such as (1) understanding the medical regimen, including considerations around depression, medication concerns (possible side effects and interactions), and physical symptoms (pain and fatigue) (2) trust in the provider (3) communication with providers (4) receiving adequate information from medical staff about treatment side effects (5) having access to telephone support and advisory services and (6) having assistance with knowing which symptoms should trigger a doctor visit. Previous results have shown that African American patients with SLE were more likely than white patients to have higher levels of unmet needs related to health services and information. Persistent disparities may be due to the non-responsiveness of existing programs to the unique needs of African Americans and/or women with SLE. Evidence-based self-management interventions, designed to enhance social support and provide health education among patients with lupus, have reduced pain, improved function, and delayed disability, but African Americans and women are still disproportionately impacted by SLE. Women with lupus from medically underserved areas have unique needs best addressed with an intervention designed through collaboration between community members and researchers. Improvements in quality of life and mental health were proposed outcome measures. Newly diagnosed women were optimal intervention targets. Twenty of 29 participants (69%) favored a peer support intervention 17 (59%) also supported a lupus health passport. Themes included the desire for lupus education, isolation at the time of diagnosis, emotional and physical barriers to care, and the need for assistance navigating the healthcare system.
Medically underserved areas by zip code zip#
80% were African American and 83% were from medically underserved zip codes. Twenty-nine women with lupus participated in three focus groups, (n = 9, 9, 11). We categorized interventions by benefits, limitations, target populations and implementation questions. Seventy-five-minute sessions were recorded, transcribed and coded thematically using interpretative phenomenologic analysis and single counting methods. Women were randomly assigned to three focus groups. Hospital-based clinics and support groups also recruited participants. We held focus groups for women from medically underserved communities to discuss interventions to improve care.įrom our Lupus Registry, we invited 282 women, ≥18 years, residing in urban, medically underserved areas. Systemic lupus erythematosus (lupus) disproportionately affects women, racial/ethnic minorities and low-income populations.
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