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. 2019 Jul 23:10:1658.
doi: 10.3389/fpsyg.2019.01658. eCollection 2019.

An International Validation of a Clinical Tool to Assess Carers' Quality of Life in Huntington's Disease

Aimee Aubeeluck  1 , Edward J N Stupple  2 , Malcolm B Schofield  3 , Alis C Hughes  4 , Lucienne van der Meer  5 , Bernhard Landwehrmeyer  6 , Aileen K Ho  7   8
Affiliations

An International Validation of a Clinical Tool to Assess Carers' Quality of Life in Huntington's Disease

Aimee Aubeeluck et al. Front Psychol. .

Abstract

Family carers of individuals living with Huntington's disease (HD) manage a distinct and unique series of difficulties arising from the complex nature of HD. This paper presents the validation of the definitive measure of quality of life (QoL) for this group. The Huntington's Disease Quality of Life Battery for Carers (HDQoL-C) was expanded (n = 47) and then administered to an international sample of 1716 partners and family carers from 13 countries. In terms of the psychometric properties of the tool, exploratory analysis of half of the sample demonstrated good internal consistency and reliability. Some items on the full version did not meet psychometric thresholds and a short version (HDQoL-Cs) (n = 23) was developed based on more stringent criteria. This was achieved using standard psychometric item reduction techniques to both increase reliability and reduce the burden of carers completing the scale. Confirmatory factor analysis of the model structure showed a good fit for all factors and indicated that the HDQoL-C and HDQoL-Cs are psychometrically robust measures of QoL. We found that carers who lived with and looked after their spouse/partner had reduced sense of coping, hope for the future, and overall QoL. Carers with children who were at risk carried the gene or were symptomatic also had poorer QoL outcomes. Findings indicated the HDQoL-C and HDQoL-Cs are valid in multiple languages and across varied cultures as measures of self-reported QoL in family carers of individual's living with HD. These psychometrically validated tools can aid and guide the implementation of therapeutic interventions to improve life quality in this population and research into international and cross-cultural carer experiences. The HDQoL-Cs is recommended as the definitive international measure of HD carer QoL.

Keywords: Huntington’s disease; carers; family caregiving; psychometrics; quality of life; questionnaire.

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References

    1. Aubeeluck A. (2005). The Impact of Huntington’s Disease on the Quality of Life of Spousal Caregivers. Ph.D. thesis, University of Derby: Derby.
    1. Aubeeluck A., Buchanan H. (2005). The huntington’s disease quality of life battery for carers (HDQOL-C). Health Psychol. Update 14 2–4.
    1. Aubeeluck A., Buchanan H. (2006). Capturing the huntington’s disease spousal carer experience: a preliminary investigation using he photovoice method. Dementia 5 95–116. 10.1177/1471301206059757 - DOI
    1. Aubeeluck A., Buchanan H. (2007). The huntington’s disease quality of life battery for carers: reliability and validity. Clin. Genet. 71 434–445. 10.1111/j.1399-0004.2007.00784.x - DOI - PubMed
    1. Aubeeluck A., Buchanan H., Stupple E. (2012). “All the burden on all the carers” – exploring the notion of quality of life with family caregivers of huntington’s disease patients. Qual. Life Res. 21 1425–1435. 10.1007/s11136-011-0062-x - DOI - PubMed

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