Objective Systemic lupus erythematosus (lupus) disproportionately affects women, racial/ethnic minorities and low-income populations. We held focus groups for women from medically underserved communities to discuss interventions to improve care. Methods From our Lupus Registry, we invited 282 women, > 18 years, residing in urban, medically underserved areas. Hospital-based clinics and support groups also recruited participants. Women were randomly assigned to 3 focus groups. 75-minute sessions were recorded, transcribed and coded thematically using interpretative phenomenologic analysis and single counting methods. We categorized interventions by benefits, limitations, target populations and implementation questions. Results 29 women with lupus participated in 3 focus groups, (n=9, 9, 11). 80% were African American and 83% were from medically underserved zip codes. 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. 20 of 29 participants (69%) favored a peer support intervention; 17 (59%) also supported a lupus health passport. Newly diagnosed women were optimal intervention targets. Improvements in quality of life and mental health were proposed outcome measures. Conclusion Women with lupus from medically underserved areas have unique needs best addressed with an intervention designed through collaboration between community members and researchers.

Objectives: Describe the development and feasibility of a telephone peer support program that provides education, emotional support, and enhances coping skills among rheumatoid arthritis (RA) patients. Methods: In an academic arthritis center, peer coaches received 5 training modules: 1) definition and expectations of peer coaching, 2) structure/management of phone calls, 3) confidentiality, 4) psychological techniques for encounters, 5) referral guidelines and resources. Follow-up, acceptability and comparison with patients receiving standard care included mean adjusted change differences at 6 months in fatigue, pain, self-efficacy, functional status (SF-12), flare frequency and medication adherence (ASK-20). Results: Eighteen peer coaches were assigned on average, 1.7 (SD, 1.4) patients. They spoke 8.4 (SD, 7.2) times; 21 of 29 patients completed the program. The most common topics requested were how to manage flares, 10(48%), medical aspects of RA, 10(48%) and understanding how to live with RA, 9(43%). After 6 months, non-significant improvements occurred in study outcomes (largest changes SF-12 PCS (mean adjusted change (SE) intervention v. standard care, 4.7(2.6) v. 0.5(2.0)) and how RA impacts one’s life (1.8(6.4) v. −4.9(5.8)). Participants reported many benefits from peer support. They felt less alone, 13(62%), more part of a sharing community, 12(57%) and had a better understanding of RA, 9(43%). They felt calmer, 9(43%), less sad,5(24%) and that they had more support from family and friends, 5(24%). Conclusions: An RA telephone peer support program is feasible and acceptable to patients. While the study was underpowered to detect statistical improvements, patients reported benefits suggesting the need for randomized evaluation.