title: Missed opportunities for timely diagnosis of pediatric lupus in South Africa: a qualitative study.
abstract: BACKGROUND
  Systemic Lupus Erythematosus (SLE) is a serious multisystem autoimmune disease, which is more aggressive in children and people of African descent. In South Africa, pediatric SLE (pSLE) patients are at high risk for severe disease. Similar to pSLE worldwide, South African children and adolescents with SLE require subspecialized medical care. The aim of this study is to describe the care-seeking experiences of families and examine factors that contribute to delays in the diagnosis of pSLE. Specifically, we sought to identify factors to inform interventions that support the timely referral and diagnosis of pediatric SLE patients in South Africa.
  
  
  METHODS
  In-depth, semi-structured interviews were conducted with 22 caregivers of pSLE patients recruited from two government hospitals in Cape Town, South Africa in 2014. Interviews were audio-recorded, transcribed, and analyzed for themes related to barriers to diagnosis.
  
  
  RESULTS
  Six themes were identified and classified as either caregiver or health system barriers to diagnosis. Caregiver barriers included lack of knowledge regarding SLE, financial difficulties, and the social stigma of SLE. Health system barriers were lack of trained staff, a complex medical system, and misdiagnosis.
  
  
  CONCLUSIONS
  Caregivers reported missed opportunities for diagnosing pSLE in their children. Raising public awareness may improve caregiver awareness and reduce stigma of pSLE. Improving family education at diagnosis holds potential to increase patient-physician trust and mitigate fear. Education modules for primary care providers at initial point of contact with the health care system may improve recognition of early pSLE and facilitate expedited referral to a specialist.
authors.affiliation: National Institute of Arthritis, Musculoskeletal, and Skin Diseases, NIH, DHHS, 9000 Rockville Pike, Building 10, 12 N248 Room 28, Bethesda, MD, 20892-1102, USA. laura.lewandowski@nih.gov.|Duke Global Health Institute, Duke University, 310 Trent Drive, Durham, NC, 27710, USA. laura.lewandowski@nih.gov.|Pediatric Rheumatology, Duke University Medical Center, 2301 Erwin Road, Durham, NC, USA. laura.lewandowski@nih.gov.|Red Cross War Memorial Children's Hospital, University of Cape Town, Klipfontein Road, Rondebosch, Cape Town, Western Cape, South Africa. laura.lewandowski@nih.gov.
authors.forename: Laura B
authors.initials: LB
authors.lastname: Lewandowski
authors.affiliation: Duke Global Health Institute, Duke University, 310 Trent Drive, Durham, NC, 27710, USA.
authors.forename: Melissa H
authors.initials: MH
authors.lastname: Watt
authors.affiliation: Pediatric Rheumatology, Duke University Medical Center, 2301 Erwin Road, Durham, NC, USA.
authors.forename: Laura E
authors.initials: LE
authors.lastname: Schanberg
authors.affiliation: Duke Global Health Institute, Duke University, 310 Trent Drive, Durham, NC, 27710, USA.
authors.forename: Nathan M
authors.initials: NM
authors.lastname: Thielman
authors.affiliation: Red Cross War Memorial Children's Hospital, University of Cape Town, Klipfontein Road, Rondebosch, Cape Town, Western Cape, South Africa.
authors.forename: Christiaan
authors.initials: C
authors.lastname: Scott
mesh_terms: D000293:Adolescent; D017028:Caregivers; D002648:Child; D003144:Communication Barriers; D017281:Cost of Illness; D057210:Delayed Diagnosis; D003951:Diagnostic Errors; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006297:Health Services Accessibility / Q000191:economics; D054625:Healthcare Disparities; D006801:Humans; D008180:Lupus Erythematosus, Systemic / Q000175:diagnosis* / Q000191:economics / Q000628:therapy; D008297:Male; D010342:Patient Acceptance of Health Care / Q000706:statistics & numerical data; D036301:Qualitative Research; D012017:Referral and Consultation; D012959:Socioeconomic Factors; D013019:South Africa; D013240:Stereotyping
keywords: Access to care; Africa; Chronic illness; Lupus; Pediatric SLE; Qualitative