TY - JOUR
T1 - A validation study of the ICECAP-O in informal carers of people with dementia from eight European Countries
AU - Perry-Duxbury, Meg
AU - van Exel, Job
AU - Brouwer, Werner
AU - Skoldunger, Anders
AU - Goncalves-Pereira, Manuel
AU - Irving, Kate
AU - Meyer, Gabriele
AU - Selbaek, Geir
AU - Woods, Bob
AU - Zanetti, Orazio
AU - Verhey, Frans
AU - Wimo, Anders
AU - Handels, Ron L. H.
AU - ActifCare Consortium
N1 - Funding Information:
This is an EU Joint Programme—Neurodegenerative Disease Research (JPND) project. The project is supported through the following funding organizations under the aegis of JPND— www.jpnd.eu (Germany, German Ministry for Education and Research, Ireland, Health Research Board (HRB), Italy, Italian Ministry of Health, Netherlands, The Netherlands Organization for Health Research and Development (ZonMW)/Alzheimer Netherlands, Norway, The Research Council of Norway, Portugal, Fundação para a Ciência e a Tecnologia (FCT-JPND-HC/0001/2012), Sweden, Swedish Research Council (SRC), United Kingdom, Economic and Social Research Council (ESRC)). Acknowledgements
Funding Information:
The Actifcare Consortium partners are as follows: Coordinator: Maastricht University (NL): Frans Verhey, professor (scientific coordinator, WP1 leader). Consortium members: Maastricht University (NL): Marjolein de Vugt, Claire Wolfs, Ron Handels, Liselot Kerpershoek. Martin Luther University Halle-Wittenberg (DE): Gabriele Meyer (WP2 leader), Astrid Stephan, Anja Bieber. Bangor University (UK): Bob Woods (WP3 leader), Hannah Jelley. Nottingham University (UK): Martin Orrell. Karolinska Institutet (SE): Anders Wimo (WP4 leader), Anders Sköldunger, Britt-Marie Sjölund. Oslo University Hospital (NW): Knut Engedal, Geir Selbaek (WP5 leader), Mona Michelet, Janne Røsvik, Siren Eriksen. Dublin City University (IE): Kate Irving (WP6 leader), Louise Hopper, Rachael Joyce. CEDOC, Nova Medical School, Faculdade de Ciências Médicas. Universidade Nova de Lisboa (PT): Manuel Gonçalves-Pereira, Maria J. Marques, Conceição Balsinha, Ana Machado, on behalf of the Portuguese Actifcare team. Alzheimer’s Research Unit-Memory Clinic, IRCCS Centro S.Giovanni di Dio (IT): Orazio Zanetti, Daniel Portolani.
Publisher Copyright:
© 2019, The Author(s).
PY - 2020/1
Y1 - 2020/1
N2 - 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.
AB - 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.
KW - Construct validity
KW - ICECAP-O
KW - Informal care
KW - Dementia
KW - Well-being
KW - OLDER-PEOPLE
KW - HEALTH
KW - LIFE
KW - INSTRUMENT
KW - PREFERENCES
KW - CAREGIVERS
KW - VALIDITY
KW - OUTCOMES
KW - VERSION
KW - CHOICE
U2 - 10.1007/s11136-019-02317-3
DO - 10.1007/s11136-019-02317-3
M3 - Article
C2 - 31595452
SN - 0962-9343
VL - 29
SP - 237
EP - 251
JO - Quality of Life Research
JF - Quality of Life Research
IS - 1
ER -