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An International Validation of a Clinical Tool to Assess Carers’ Quality of Life in Huntington’s Disease
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...
Autores principales: | , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
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Frontiers Media S.A.
2019
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6676956/ https://www.ncbi.nlm.nih.gov/pubmed/31402885 http://dx.doi.org/10.3389/fpsyg.2019.01658 |
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author | Aubeeluck, Aimee Stupple, Edward J. N. Schofield, Malcolm B. Hughes, Alis C. van der Meer, Lucienne Landwehrmeyer, Bernhard Ho, Aileen K. |
author_facet | Aubeeluck, Aimee Stupple, Edward J. N. Schofield, Malcolm B. Hughes, Alis C. van der Meer, Lucienne Landwehrmeyer, Bernhard Ho, Aileen K. |
author_sort | Aubeeluck, Aimee |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-6676956 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | Frontiers Media S.A. |
record_format | MEDLINE/PubMed |
spelling | pubmed-66769562019-08-09 An International Validation of a Clinical Tool to Assess Carers’ Quality of Life in Huntington’s Disease Aubeeluck, Aimee Stupple, Edward J. N. Schofield, Malcolm B. Hughes, Alis C. van der Meer, Lucienne Landwehrmeyer, Bernhard Ho, Aileen K. Front Psychol Psychology 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. Frontiers Media S.A. 2019-07-23 /pmc/articles/PMC6676956/ /pubmed/31402885 http://dx.doi.org/10.3389/fpsyg.2019.01658 Text en Copyright © 2019 Aubeeluck, Stupple, Schofield, Hughes, van der Meer, Landwehrmeyer and Ho. http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms. |
spellingShingle | Psychology Aubeeluck, Aimee Stupple, Edward J. N. Schofield, Malcolm B. Hughes, Alis C. van der Meer, Lucienne Landwehrmeyer, Bernhard Ho, Aileen K. An International Validation of a Clinical Tool to Assess Carers’ Quality of Life in Huntington’s Disease |
title | An International Validation of a Clinical Tool to Assess Carers’ Quality of Life in Huntington’s Disease |
title_full | An International Validation of a Clinical Tool to Assess Carers’ Quality of Life in Huntington’s Disease |
title_fullStr | An International Validation of a Clinical Tool to Assess Carers’ Quality of Life in Huntington’s Disease |
title_full_unstemmed | An International Validation of a Clinical Tool to Assess Carers’ Quality of Life in Huntington’s Disease |
title_short | An International Validation of a Clinical Tool to Assess Carers’ Quality of Life in Huntington’s Disease |
title_sort | international validation of a clinical tool to assess carers’ quality of life in huntington’s disease |
topic | Psychology |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6676956/ https://www.ncbi.nlm.nih.gov/pubmed/31402885 http://dx.doi.org/10.3389/fpsyg.2019.01658 |
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