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Health-related quality of life in Huntington's disease: A comparison of two generic instruments, SF-36 and SIP

✍ Scribed by Aileen K. Ho; Anna O.G. Robbins; Stephen J. Walters; Stephen Kaptoge; Barbara J. Sahakian; Roger A. Barker


Publisher
John Wiley and Sons
Year
2004
Tongue
English
Weight
102 KB
Volume
19
Category
Article
ISSN
0885-3185

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✦ Synopsis


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. Β© 2004 Movement Disorder Society


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## Abstract The aim of this article was to determine which aspects of Huntington's disease (HD) are most important with regard to the health‐related quality of life (HrQOL) of patients with this neurodegenerative disease. Seventy patients with HD participated in the study. Assessment comprised the