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 three focus groups. Seventy-five-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:Twenty-nine women with lupus participated in three 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. Twenty 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.
RCT Entities:
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 three focus groups. Seventy-five-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: Twenty-nine women with lupus participated in three 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. Twenty 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.
Authors: Shikha Mittoo; Allan C Gelber; Carol A Hitchon; Earl D Silverman; Janet E Pope; Paul R Fortin; Christian Pineau; C Douglas Smith; Hector Arbillaga; Dafna D Gladman; Murray B Urowitz; Michel Zummer; Ann E Clarke; Sasha Bernatsky; Marie Hudson; Lori B Tucker; Ross E Petty; Christine A Peschken Journal: J Rheumatol Date: 2010-01-28 Impact factor: 4.666
Authors: E W Karlson; L H Daltroy; R A Lew; E A Wright; A J Partridge; A H Fossel; W N Roberts; S H Stern; K V Straaton; M C Wacholtz; A F Kavanaugh; J M Grosflam; M H Liang Journal: Arthritis Rheum Date: 1997-01
Authors: Mónica Fernández; Graciela S Alarcón; Jaime Calvo-Alén; Rosa Andrade; Gerald McGwin; Luis M Vilá; John D Reveille Journal: Arthritis Rheum Date: 2007-05-15
Authors: Edith M Williams; J Madison Hyer; Ramakrishnan Viswanathan; Trevor D Faith; Delia Voronca; Mulugeta Gebregziabher; Jim C Oates; Leonard Egede Journal: Arthritis Care Res (Hoboken) Date: 2018-04-18 Impact factor: 4.794
Authors: C R Phillip; K Mancera-Cuevas; C Leatherwood; J S Chmiel; D L Erickson; E Freeman; G Granville; M Dollear; K Walker; R McNeil; C Correia; P Canessa; R Ramsey-Goldman; C H Feldman Journal: Lupus Date: 2019-10-08 Impact factor: 2.911
Authors: Trevor D Faith; Minnjuan Flournoy-Floyd; Kasim Ortiz; Leonard E Egede; Jim C Oates; Edith M Williams Journal: BMJ Open Date: 2018-11-08 Impact factor: 2.692
Authors: Edith M Williams; Leonard Egede; Jim C Oates; Clara L Dismuke; Viswanathan Ramakrishnan; Trevor D Faith; Hetlena Johnson; Jillian Rose Journal: Trials Date: 2019-08-23 Impact factor: 2.279