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dc.contributor.authorAubeeluck, Aimee
dc.contributor.authorStupple, Edward J. N.
dc.contributor.authorSchofield, Malcolm B.
dc.contributor.authorHughes, Alis C.
dc.contributor.authorvan der Meer, Lucienne
dc.contributor.authorLandwehrmeyer, Bernhard
dc.contributor.authorHo, Aileen K.
dc.date.accessioned2019-07-31T10:51:39Z
dc.date.available2019-07-31T10:51:39Z
dc.date.issued2019-07-23
dc.identifier.citationAubeeluck, A. et al. (2019) 'An international validation of a clinical tool to assess carers’ quality of life in Huntington’s Disease', Frontiers in Psychology, 10:1658. doi: 10.3389/fpsyg.2019.01658.en_US
dc.identifier.issn1664-1078
dc.identifier.doi10.3389/fpsyg.2019.01658
dc.identifier.urihttp://hdl.handle.net/10545/624041
dc.description.abstractFamily 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.en_US
dc.description.sponsorshipN/Aen_US
dc.language.isoenen_US
dc.publisherFrontiersen_US
dc.relation.urlhttps://www.frontiersin.org/article/10.3389/fpsyg.2019.01658/fullen_US
dc.rightsAttribution-NonCommercial-NoDerivs 3.0 United States*
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/3.0/us/*
dc.subjectfamily caregivingen_US
dc.subjectpsychometricsen_US
dc.subjectcarersen_US
dc.subjectquality of lifeen_US
dc.subjectHuntington’s diseaseen_US
dc.titleAn international validation of a clinical tool to assess carers’ quality of life in Huntington’s Disease.en_US
dc.typeArticleen_US
dc.contributor.departmentUniversity of Derbyen_US
dc.contributor.departmentUniversity of Nottinghamen_US
dc.contributor.departmentLeiden University Medical Centreen_US
dc.contributor.departmentUlm University Medical Centeren_US
dc.contributor.departmentUniversity of Readingen_US
dc.identifier.journalFrontiers in Psychologyen_US
dc.source.journaltitleFrontiers in Psychology
dc.source.volume10
dcterms.dateAccepted2019-07-01
refterms.dateFOA2019-07-31T10:51:39Z
dc.author.detail776825en_US


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