title: Health-related quality of life in Huntington's disease: a comparison of two generic instruments, SF-36 and SIP.
abstract: Whereas several clinical endpoints in monitoring the response to treatment in patients with Huntington's disease (HD) have been explored, there has been a paucity of research in the quality of life in such patients. The aim of this study was to validate the use of two generic health-related quality of life instruments (the Short Form 36 health survey questionnaire [SF-36] and the Sickness Impact Profile [SIP]) and to evaluate their psychometric properties. We found that both instruments demonstrated acceptable convergent validity and reliability for patients and carers. However, there was an advantage in using the SF-36 because of its more robust construct validity and test-retest reliability; furthermore, motor symptoms appeared to influence some strictly nonmotor dimensions of the SIP. On a pragmatic level, the SF-36 is shorter and quicker to administer and, therefore, easier for patients at various stages of the disease to complete. Thus, the SF-36 would appear to be the recommended instrument of choice for patients with HD and their carers, although further work needs to be done to investigate the sensitivity of this instrument longitudinally.
authors.affiliation: Cambridge Centre for Brain Repair, University of Cambridge, United Kingdom. aileenkho@netscape.net
authors.forename: Aileen K
authors.initials: AK
authors.lastname: Ho
authors.forename: Anna O G
authors.initials: AO
authors.lastname: Robbins
authors.forename: Stephen J
authors.initials: SJ
authors.lastname: Walters
authors.forename: Stephen
authors.initials: S
authors.lastname: Kaptoge
authors.forename: Barbara J
authors.initials: BJ
authors.lastname: Sahakian
authors.forename: Roger A
authors.initials: RA
authors.lastname: Barker
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology; D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology; D004185:Disability Evaluation; D005260:Female; D006801:Humans; D006816:Huntington Disease / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D009460:Neurologic Examination; D011594:Psychometrics; D011788:Quality of Life / Q000523:psychology*; D015203:Reproducibility of Results; D012803:Sick Role; D018434:Sickness Impact Profile