A validation study of the ICECAP-O in informal carers of people with dementia from eight European Countries

Meg Perry-Duxbury*, Job van Exel, Werner Brouwer, Anders Skoldunger, Manuel Goncalves-Pereira, Kate Irving, Gabriele Meyer, Geir Selbaek, Bob Woods, Orazio Zanetti, Frans Verhey, Anders Wimo, Ron L. H. Handels, ActifCare Consortium

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

Purpose The pressure on healthcare budgets remains high, partially due to the ageing population. Economic evaluation can be a helpful tool to inform resource allocation in publicly financed systems. Such evaluations frequently use health-related outcome measures. However, in areas such as care of older people, improving health outcomes is not necessarily the main focus of care interventions and broader outcome measures, including outcomes for those providing informal care, may be preferred when evaluating such interventions. This paper validates a recently introduced well-being measure, the ICECAP-O, in a population of informal carers for people with dementia from eight European countries. Methods Convergent and discriminant validity tests were performed to validate the ICECAP-O using data obtained in a sample of 451 respondents from Germany, Ireland, Italy, the Netherlands, Norway, Portugal, Sweden and the UK. These respondents completed a number of standardized questionnaires within the framework of the Actifcare project. Results The ICECAP-O performed well among informal carers, in terms of both convergent and discriminant validity. In the multivariate analysis, it was found to be significantly associated with the age of the person with dementia, EQ-5D-5L health problem index of the person with dementia, carer-patient relationship, care recipient CDR, carer LSNS Score, the PAI score, and Perseverance Time. Conclusion The ICECAP-O appears to be a valid measure of well-being in informal carers for people with dementia. The ICECAP-O may therefore be useful as an outcome measure in economic evaluations of interventions aimed at such informal carers, when these aim to improve well-being beyond health.

Original languageEnglish
Pages (from-to)237-251
Number of pages15
JournalQuality of Life Research
Volume29
Issue number1
DOIs
Publication statusPublished - Jan 2020

Keywords

  • Construct validity
  • ICECAP-O
  • Informal care
  • Dementia
  • Well-being
  • OLDER-PEOPLE
  • HEALTH
  • LIFE
  • INSTRUMENT
  • PREFERENCES
  • CAREGIVERS
  • VALIDITY
  • OUTCOMES
  • VERSION
  • CHOICE

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