Instrument Information

• LupusQoL is a 34-item Systemic Lupus Erythematosus(SLE) specific health-related quality of life (HRQoL) measure.

• It was developed in the UK [McElhone et al, 2007] for use in adults with systemic lupus erythematosus (SLE).

• Items were derived from semi-structured interviews with 30 patients with SLE.

• The interviews were informed by the literature and from interviews with 10 clinicians specializing in SLE.

• Cognitive debriefing with a further 20 patients with SLE was conducted before the first version of the LupusQoL was devised.

• Three versions of the questionnaire were evaluated in over 600 outpatients.

• Factor analysis was used to examine the construct validity of the three versions of the questionnaire.

• The final version of the LupusQoL consists of eight domains: physical health (8 items), pain (3 items), planning (3 items), intimate relationships (2 items), burden to others (3 items), emotional health (6 items), body image (5 items), and fatigue (4 items).

• The instrument demonstrated good internal reliability (Cronbach's 0.88 to 0.95), good test-retest reliability (r 0.72 to 0.93), good concurrent validity with the comparable domains of the SF-36 (r 0.71 to 0.79) and good discriminant validity for different levels of disease activity, measured by the British Isles Lupus Assessment Group (BILAG) index, and damage (SLICC/ACR-DI) but not for all domains.

• The instrument has acceptable ceiling effects and minimal floor effects.

• Limitations include the lack of males in its initial development phase. In subsequent phases, approximately 6% of patients recruited were male (representative of the SLE population in the UK).

• There is currently no sensitivity to change data.