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

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 qua...

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Bibliographic Details
Published in:Movement disorders 2004-11, Vol.19 (11), p.1341-1348
Main Authors: Ho, Aileen K., Robbins, Anna O.G., Walters, Stephen J., Kaptoge, Stephen, Sahakian, Barbara J., Barker, Roger A.
Format: Article
Language:English
Subjects:
Activities of Daily Living - psychology
Adult
Aged
Biological and medical sciences
Caregivers - psychology
carers
Degenerative and inherited degenerative diseases of the nervous system. Leukodystrophies. Prion diseases
Disability Evaluation
Female
Headache. Facial pains. Syncopes. Epilepsia. Intracranial hypertension. Brain oedema. Cerebral palsy
Humans
Huntington Disease - psychology
Huntington's disease
Male
Medical sciences
Middle Aged
Nervous system (semeiology, syndromes)
Neurologic Examination
Neurology
Psychometrics
quality of life
Quality of Life - psychology
Reproducibility of Results
SF-36
Sick Role
Sickness Impact Profile
SIP
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Summary: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. © 2004 Movement Disorder Society
ISSN:0885-3185
1531-8257
DOI:10.1002/mds.20208