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

Movement Disorders : Official Journal of the Movement Disorder Society
Aileen K HoRoger A Barker

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.

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Citations

Jun 5, 2008·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Oliver SchierzAndrás Szentpétery
Aug 9, 2011·Neurology Research International·Rebecca E ReadyJane S Paulsen
Aug 21, 2015·Journal of Cross-cultural Gerontology·Jhon Alexander MorenoJuan Carlos Arango-Lasprilla
Jul 28, 2016·BMC Psychology·Monique van Bruggen-RufiRaymund Roos
Mar 18, 2017·Journal of Huntington's Disease·Monique C H van Bruggen-RufiRaymund A C Roos
Mar 24, 2018·Movement Disorders : Official Journal of the Movement Disorder Society·Tiago A MestreUNKNOWN Members of the MDS Committee on Rating Scales Development
Oct 8, 2005·Movement Disorders : Official Journal of the Movement Disorder Society·Aileen K HoRoger A Barker
Jan 5, 2008·Movement Disorders : Official Journal of the Movement Disorder Society·Rebecca E ReadyJane S Paulsen
Jan 18, 2016·Movement Disorders Clinical Practice·Esther CuboUNKNOWN Spanish Members of the European Huntington's Disease Registry
Jan 16, 2007·American Journal of Medical Genetics. Part B, Neuropsychiatric Genetics : the Official Publication of the International Society of Psychiatric Genetics·Janet K WilliamsJane Paulsen
Jan 30, 2019·International Journal of Environmental Research and Public Health·Yuhua LiLizhang Chen
Dec 20, 2008·Movement Disorders : Official Journal of the Movement Disorder Society·Aileen K HoRoger A Barker
Dec 29, 2017·Journal of the International Neuropsychological Society : JINS·Clare L KempnichJulie C Stout
Nov 13, 2009·Movement Disorders : Official Journal of the Movement Disorder Society·Jennifer De SouzaHugh Rickards
Jan 11, 2017·Health and Quality of Life Outcomes·Marleen R van WalsemNada Andelic
Oct 27, 2018·Movement Disorders Clinical Practice·Tiago A MestreUNKNOWN Members of the MDS Committee on Rating Scales Development
Aug 20, 2019·Journal of Huntington's Disease·Noelle E CarlozziRebecca E Ready
Feb 4, 2006·British Journal of Neurosurgery·E E DevitoB J Sahakian
Jun 20, 2017·Journal of Neurologic Physical Therapy : JNPT·Nora E FritzUNKNOWN Members of the Physiotherapy Working Group of the European Huntingtonʼs Disease Network

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