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A psychometric comparison of two Carer Quality of Life Questionnaires in Huntington's disease: implications for neurodegenerative disorders
Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.ORCID iD: 0000-0003-2174-372X
School of Nursing Sciences, Faculty of Medicine and Health, University of East Anglia.
2013 (English)In: Journal of Huntington's Disease, ISSN 1879-6397, Vol. 2, no 3, 315-322 p.Article in journal (Refereed) Published
Abstract [en]

Background: The carer impact of neurodegenerative disorders such as Huntington's disease (HD) is vast. Attempts to measure carer QoL in neurodegenerative disorders include the three-dimensional (Practical aspects of Caregiving, PC; Satisfaction with Life, SL; Feelings about Living with Huntington's disease, FL) Huntington's Disease Quality of Life Battery for Carers (HDQoL-C) and the unidimensional Alzheimer's Carer's Quality of Life Inventory (ACQLI). However, evidence regarding their psychometric properties is sparse. Objectives: To test and compare the psychometric properties of the HDQoL-C, its short-form, and the ACQLI among HD carers. Methods: Data from 61 HD carers (36 women; mean age, 55) were analysed using traditional psychometric methods. Results: Data completeness was good (>95% computable scale scores) but compromised for the PC and total HDQoL-C scales (≤80% computable scale scores). Scaling assumptions were supported for the SL and ACQLI scales (corrected item-total correlations ≥0.38; scaling success rates, 94–100%) but not for the PC, FL or total HDQoL-C scales (corrected item-total correlations ≥0.08; scaling success rates, 39–62%). Floor/ceiling effects were ≤9.8%. Reliabilities were ≥0.84, except for the PC scale (0.62). Conclusions: The HDQoL-C failed to exhibit suitability as a HD carer outcome measure, as two of its three scales did not meet basic psychometric criteria. The third scale (SL) did not outperform the ACQLI. This suggests that carer impact is not disease specific across neurodegenerative disorders.

Place, publisher, year, edition, pages
2013. Vol. 2, no 3, 315-322 p.
Keyword [en]
Alzheimer's disease, caregivers, Huntington's disease, neurodegeneration, quality of life, reliability, validity
National Category
URN: urn:nbn:se:hkr:diva-11562DOI: 10.3233/JHD-130065PubMedID: 25062679OAI: diva2:682622
Available from: 2013-12-28 Created: 2013-12-28 Last updated: 2014-09-15Bibliographically approved

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