title: Designing an intervention for women with systemic lupus erythematosus from medically underserved areas to improve care: a qualitative study.
abstract: 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.
  
  
  CONCLUSIONS
  Women with lupus from medically underserved areas have unique needs best addressed with an intervention designed through collaboration between community members and researchers.
authors.affiliation: Division of Rheumatology, Immunology and Allergy, Department of Medicine, Brigham and Women's Hospital, Boston, MA 02115, USA. chfeldman@partners.org
authors.forename: C H
authors.initials: CH
authors.lastname: Feldman
authors.forename: B L
authors.initials: BL
authors.lastname: Bermas
authors.forename: M
authors.initials: M
authors.lastname: Zibit
authors.forename: P
authors.initials: P
authors.lastname: Fraser
authors.forename: D J
authors.initials: DJ
authors.lastname: Todd
authors.forename: P R
authors.initials: PR
authors.lastname: Fortin
authors.forename: E
authors.initials: E
authors.lastname: Massarotti
authors.forename: K H
authors.initials: KH
authors.lastname: Costenbader
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001900:Boston; D003153:Community Health Services; D003159:Community-Institutional Relations; D003376:Counseling; D004644:Emotions; D005260:Female; D017144:Focus Groups; D007722:Health Knowledge, Attitudes, Practice; D006297:Health Services Accessibility; D054625:Healthcare Disparities; D006801:Humans; D008180:Lupus Erythematosus, Systemic / Q000175:diagnosis / Q000208:ethnology / Q000523:psychology / Q000628:therapy*; D008507:Medically Underserved Area; D008603:Mental Health; D008875:Middle Aged; D010174:Pamphlets; D010353:Patient Education as Topic; D062526:Patient Navigation; D057240:Patient Preference; D010379:Peer Group; D036301:Qualitative Research; D011788:Quality of Life; D012042:Registries; D012107:Research Design; D012657:Self-Help Groups; D012934:Social Isolation; D013689:Telephone; D016896:Treatment Outcome; D019037:Urban Health Services