ASSESSMENT OF FUNCTIONAL ABILITY IN PATIENTS WITH SCLERODERMA - A PROPOSED NEW DISABILITY ASSESSMENT INSTRUMENT

Objective. To develop a simple assessment of functional ability in pat ients with scleroderma and to examine its reliability both as a patien t self-administered instrument and when administered by a trained obse rver. Methods. An 11 item, 4 grade, functional assessment questionnair e was developed after extensive consultation with patients, physiother apists (PT), and occupational therapists (OT) with the aim of includin g all functional areas of relevance. The instrument was self-administe red by patients after an interval of 7 days. In the interval, the pati ents were assessed using the same instrument by direct observation fro m both a PT and an OT. Forty-seven patients with scleroderma, of varyi ng severity, were recruited from 2 centers. Results were similar for b oth centers and data were pooled for analysis. Results. Agreement betw een the patients' first and 2nd assessment was good for all questions (estimated kappas 0.69 to 0.94) with no evidence of an order effect. A greement was also good between therapists (estimated kappas 0.47 to 0. 81). There was poor agreement between patients and therapists, with pa tients rating their disability substantially higher compared to the st andardized therapist assessment. Conclusion. This assessment schedule has high face and content validity and has excellent reliability both between trained therapists and within patients over a short time perio d. Its administration either as a self-report or by a therapist depend s, in part, on the type of investigation undertaken.