The Huntington's disease quality of life battery for carers: reliability and validity

Clin Genet. 2007 May;71(5):434-45. doi: 10.1111/j.1399-0004.2007.00784.x.

Abstract

Research into the experience of the Huntington Disease (HD) spousal carer has established that carers experience several unique obstacles within their care-giving role. However, there is still a need to establish methodically the factors that impact on the HD spousal carers' situation and ultimately their quality of life. The aim of this pilot study, which was a result of three previous exploratory studies, was to validate a HD-specific quality-of-life (QoL) measure, the Huntington disease quality-of-life battery for carers (HDQoL-C) for use (initially) with spousal carers of HD patients. Eighty-seven HD spousal carers took part in the piloting of the HDQoL-C to assess its reliability and validity as a tool for use within QoL research. Results established the HDQoL-C as a multidimensional and psychometrically sound disease-specific and subjective QoL assessment tool that incorporates the individual's physical health, psychological state, level of independence, social relationships and personal beliefs. The HDQoL-C demonstrates good internal consistency, test-re-test reliability and congruent validity.

Publication types

  • Research Support, Non-U.S. Gov't
  • Validation Study

MeSH terms

  • Attitude to Health
  • Caregivers / psychology*
  • Family
  • Female
  • Humans
  • Huntington Disease / psychology
  • Huntington Disease / therapy*
  • Male
  • Middle Aged
  • Pilot Projects
  • Principal Component Analysis
  • Psychometrics
  • Quality of Life*
  • Reproducibility of Results
  • Surveys and Questionnaires