title: Domains of health-related quality of life important and relevant to multiethnic English-speaking Asian systemic lupus erythematosus patients: a focus group study.
abstract: OBJECTIVE
  To identify health-related quality of life (HRQOL) domains of importance to multiethnic Asian systemic lupus erythematosus (SLE) patients, to identify content gaps in existing SLE-specific HRQOL measures, and to determine whether the Patient-Reported Outcomes Measurement Information System (PROMIS) item banks could serve as a core set of questions for HRQOL assessment among SLE patients.
  
  
  METHODS
  English-speaking patients with physician-diagnosed SLE from a specialist clinic in a tertiary care hospital in Singapore and a patient support group were recruited. Thematic analysis was performed to distill themes from transcripts through open coding by 2 independent coders and axial coding for refinement of categories. Items from 3 existing SLE-specific measures and PROMIS Version 1.0 Item Banks were compared with identified subthemes.
  
  
  RESULTS
  Twenty-seven female and 2 male participants (21 Chinese, 4 Malay, 3 Indian, 1 other) ages 23-62 years participated in 6 focus groups and 2 individual interviews, respectively. Twenty-one domains and 92 subthemes were identified. Domains of family, relationships, stigma and discrimination, and freedom were unaddressed by existing SLE-specific measures. Forty subthemes from 14 domains were addressed by the PROMIS Version 1.0 Item Banks (Physical Function, Pain, Fatigue, Sleep Disturbance, Sleep-Related Impairment, Anger, Anxiety, and Depression banks).
  
  
  CONCLUSIONS
  Family and stigma and discrimination (identified as content gaps) may be accentuated in the Asian sociocultural context. PROMIS item banks have tremendous potential to serve as a core set of items for HRQOL assessment in SLE patients. Additional items may be written to fill the gaps in existing PROMIS item banks.
authors.affiliation: National University of Singapore, Singapore.
authors.forename: Yen Ling Mandy
authors.initials: YL
authors.lastname: Ow
authors.forename: Julian
authors.initials: J
authors.lastname: Thumboo
authors.forename: David
authors.initials: D
authors.lastname: Cella
authors.forename: Yin Bun
authors.initials: YB
authors.lastname: Cheung
authors.forename: Kok
authors.initials: K
authors.lastname: Yong Fong
authors.forename: Hwee Lin
authors.initials: HL
authors.lastname: Wee
mesh_terms: D000328:Adult; D044466:Asian People / Q000208:ethnology* / Q000523:psychology; D005006:Ethnicity / Q000208:ethnology* / Q000523:psychology; D005260:Female; D017144:Focus Groups / Q000379:methods*; D006304:Health Status; D006801:Humans; D008180:Lupus Erythematosus, Systemic / Q000175:diagnosis / Q000208:ethnology* / Q000523:psychology; D008297:Male; D008875:Middle Aged; D019303:Multilingualism; D011788:Quality of Life / Q000523:psychology; D055815:Young Adult