Dr. Cella has received consultant fees, speaking fees, and/or honoraria (less than $10,000 each) from Genentech, Bayer, Novartis, and GlaxoSmithKline, and (more than $10,000) from Pfizer.
Systemic Lupus Erythematosus
Domains of health-related quality of life important and relevant to multiethnic English-speaking Asian systemic lupus erythematosus patients: A focus group study
Article first published online: 31 MAY 2011
Copyright © 2011 by the American College of Rheumatology
Arthritis Care & Research
Volume 63, Issue 6, pages 899–908, June 2011
How to Cite
Ow, Y. L. M., Thumboo, J., Cella, D., Cheung, Y. B., Yong Fong, K. and Wee, H. L. (2011), Domains of health-related quality of life important and relevant to multiethnic English-speaking Asian systemic lupus erythematosus patients: A focus group study. Arthritis Care Res, 63: 899–908. doi: 10.1002/acr.20462
- Issue published online: 31 MAY 2011
- Article first published online: 31 MAY 2011
- Accepted manuscript online: 18 MAR 2011 12:16PM EST
- Manuscript Accepted: 28 FEB 2011
- Manuscript Received: 17 OCT 2010
- National Medical Research Council (Singapore) New Investigator Grant. Grant Number: NMRC/NIG/0039/2008
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.
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.
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).
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.