title: Impact of systemic lupus erythematosus on health, family, and work: the patient perspective.
abstract: OBJECTIVE
  Qualitative research among patients with systemic lupus erythematosus (SLE) can identify aspects of the disease relevant to clinical research and practice. A phenomenological, mixed-method approach was used to investigate these disease-driven health issues.
  
  
  METHODS
  A convenience sample of patients with SLE from Los Angeles County, California was recruited from a private, community-based rheumatology practice for participation in focus groups and interviews. Semistructured discussions explored disease manifestations and impact. A self-administered questionnaire evaluated the occurrence and importance of disease issues previously identified from literature. Patient health issues were identified through convergence using 1) qualitative analysis of focus group transcripts and 2) quantitative analysis of the questionnaire. Patients were also asked about their ability to accurately recall disease experiences.
  
  
  RESULTS
  Focus group participants (n = 23) had a mean age of 43 years and a mean disease duration of 8 years; 19 (83%) were women and 14 (61%) were white. The most frequent health issues identified by focus group transcript analysis were pain (83%), fatigue (61%), work or school impairment (48%), skin manifestations (43%), and skin sensitivity (43%). Questionnaire findings were similar: the most frequent health issues were inability to do previous activities (87%), fatigue (87%), pain (87%), and work or school impairment (83%). Most interviewed patients (7 of 10) reported an ability to accurately recall disease issues between 24 hours and 7 days.
  
  
  CONCLUSIONS
  SLE patients reported signs and symptoms that could significantly impact their functioning in daily life. Treatments that substantially improve these disease manifestations would offer considerable benefit to patients, treating physicians, and general society.
authors.affiliation: Johnson & Johnson Pharmaceutical Services, Malvern, Pennsylvania 19355, USA. drobins4@its.jnj.com
authors.forename: Don
authors.initials: D
authors.lastname: Robinson
authors.forename: Daniel
authors.initials: D
authors.lastname: Aguilar
authors.forename: Melissa
authors.initials: M
authors.lastname: Schoenwetter
authors.forename: Robert
authors.initials: R
authors.lastname: Dubois
authors.forename: Simcha
authors.initials: S
authors.lastname: Russak
authors.forename: Rosalind
authors.initials: R
authors.lastname: Ramsey-Goldman
authors.forename: Sandra
authors.initials: S
authors.lastname: Navarra
authors.forename: Benjamin
authors.initials: B
authors.lastname: Hsu
authors.forename: Dennis
authors.initials: D
authors.lastname: Revicki
authors.forename: David
authors.initials: D
authors.lastname: Cella
authors.forename: Mark Hyman
authors.initials: MH
authors.lastname: Rapaport
authors.forename: Kevin
authors.initials: K
authors.lastname: Renahan
authors.forename: Richard
authors.initials: R
authors.lastname: Ress
authors.forename: Daniel
authors.initials: D
authors.lastname: Wallace
authors.forename: Michael
authors.initials: M
authors.lastname: Weisman
mesh_terms: D000328:Adult; D005190:Family; D005221:Fatigue; D005260:Female; D017144:Focus Groups; D006304:Health Status; D006801:Humans; D007407:Interviews as Topic; D008180:Lupus Erythematosus, Systemic / Q000150:complications / Q000503:physiopathology* / Q000523:psychology; D008297:Male; D011939:Mental Recall; D008875:Middle Aged; D010146:Pain / Q000503:physiopathology; D011788:Quality of Life; D018434:Sickness Impact Profile; D012871:Skin Diseases / Q000209:etiology; D011795:Surveys and Questionnaires; D013997:Time Factors; D014937:Work