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Original Research ARTICLE Provisionally accepted The full-text will be published soon. Notify me

Front. Psychol. | doi: 10.3389/fpsyg.2019.01658

An International validation of a clinical tool to assess carers’ quality of life in Huntington’s Disease.

 Aimee V. Aubeeluck1,  Edward J. Stupple2*, Malcolm Schofield2,  Alis Hughes3,  Lucienne van der Meer4, Bernhard Landwehrmeyer5 and  Aileen K. Ho6
  • 1University of Nottingham, United Kingdom
  • 2University of Derby, United Kingdom
  • 3The European Huntington's Disease Network, Germany
  • 4Leiden University Medical Center, Netherlands
  • 5Ulm University Medical Center, Germany
  • 6University of Reading, United Kingdom

Family carers of individual’s 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 for this group. The Huntington’s Disease Quality of Life Battery for carers (HDQoL-C) was expanded 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) was developed based on more stringent criteria. 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 quality of life. We found that carers who lived with and looked after their spouse/partner had reduced sense of coping, hope for the future and overall quality of life. Carers with children who were at risk, carried the gene or were symptomatic also had poorer quality of life outcomes. Findings indicated the HDQoL-C and HDQoL-Cs are valid in multiple languages and across varied cultures as measures of self-reported quality of life 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.

Keywords: Huntington (disease), Quality of Life, carers, questionnaire, Family caregiving, Psychometrics

Received: 13 Dec 2018; Accepted: 01 Jul 2019.

Edited by:

Noa Vilchinsky, Bar-Ilan University, Israel

Reviewed by:

Ada H. Zohar, Ruppin Academic Center, Israel
Konstadina Griva, Nanyang Technological University, Singapore  

Copyright: © 2019 Aubeeluck, Stupple, Schofield, Hughes, van der Meer, Landwehrmeyer and Ho. 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.

* Correspondence: Dr. Edward J. Stupple, University of Derby, Derby, United Kingdom, e.j.n.stupple@derby.ac.uk