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Quality of Life Research
Published in: Quality of Life Research 2/2021

Open Access 01-02-2021 | Care

A validation study of the CarerQol instrument in informal caregivers of people with dementia from eight European countries

Authors: Daphne C. Voormolen, Job van Exel, Werner Brouwer, Anders Sköldunger, Manuel Gonçalves-Pereira, Kate Irving, Anja Bieber, Geir Selbaek, Bob Woods, Orazio Zanetti, Frans Verhey, Anders Wimo, Ron L. H. Handels, the Actifcare Consortium

Published in: Quality of Life Research | Issue 2/2021

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Abstract

Purpose

Informal care constitutes an important part of the total care for people with dementia. Therefore, the impact of the syndrome on their caregivers as well as that of health and social care services for people with dementia should be considered. This study investigated the convergent and clinical validity of the CarerQol instrument, which measures and values the impact of providing informal care, in a multi-country sample of caregivers for people with dementia.

Methods

Cross-sectional data from a sample of 451 respondents in eight European countries, collected by the Actifcare project, were evaluated. Convergent validity was analysed with Spearman’s correlation coefficients and multivariate correlations between the CarerQol-7D utility score and dimension scores, and other similar quality of life measures such as CarerQol-VAS, ICECAP-O, and EQ-5D. Clinical validity was evaluated by bivariate and multivariate analyses of the degree to which the CarerQol instrument can differentiate between characteristics of caregivers, care receivers and caregiving situation. Country dummies were added to test CarerQol score differences between countries.

Results

The mean CarerQol utility score was 77.6 and varied across countries from 74.3 (Italy) to 82.3 (Norway). The scores showed moderate to strong positive correlations with the CarerQol-VAS, ICECAP-O, and EQ-5D health problems score of the caregiver. Multivariate regression analysis showed that various characteristics of the caregiver, care receiver and caregiving situation were associated with caregiver outcomes, but there was no evidence of a country-level effect.

Conclusion

This study demonstrates the convergent and clinical validity of the CarerQol instrument to evaluate the impact of providing informal care for people with dementia.
Appendix
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Literature
1.
Alzheimer's Disease International. (2015). World Alzheimer Report 2015: The Global Impact of Dementia. London.
2.
Cahill, S. (2020). WHO's global action plan on the public health response to dementia: some challenges and opportunities. Aging & Mental Health, 24(2), 197–199.CrossRef
3.
4.
Alzheimer’s Disease International. 2019. World Alzheimer Report 2019: Attitudes to dementia. London: Alzheimer’s Disease International.
5.
6.
Wimo, A., Elmstahl, S., Fratiglioni, L., Sjolund, B. M., Skoldunger, A., Fagerstrom, C., et al. (2017). Formal and informal care of community-living older people: A population-based study from the swedish national study on aging and care. J Nutr Health Aging, 21(1), 17–24.CrossRef
7.
Brodaty, H., Thomson, C., Thompson, C., & Fine, M. (2005). Why caregivers of people with dementia and memory loss don’t use services. Int J Geriatr Psychiatry, 20(6), 537–546.CrossRef
8.
Bakker, C., de Vugt, M. E., van Vliet, D., Verhey, F. R., Pijnenburg, Y. A., Vernooij-Dassen, M. J., et al. (2013). The use of formal and informal care in early onset dementia: Results from the NeedYD study. Am J Geriatr Psychiatry, 21(1), 37–45.CrossRef
9.
Wimo, A., Gauthier, S., Wortmann, M., Barbarino, P., & Prince, M. (2018). Global estimates of informal care time of dementia in 2015. London.
10.
Baji, P., Golicki, D., Prevolnik-Rupel, V., Brouwer, W. B. F., Zrubka, Z., Gulacsi, L., et al. (2019). The burden of informal caregiving in Hungary, Poland and Slovenia: Results from national representative surveys. The European Journal of Health Economics, 20(Suppl 1), 5–16.CrossRef
11.
McDaid, D. (2009). The impact of informal care.
12.
Karg, N., Graessel, E., Randzio, O., & Pendergrass, A. (2018). Dementia as a predictor of care-related quality of life in informal caregivers: A cross-sectional study to investigate differences in health-related outcomes between dementia and non-dementia caregivers. BMC Geriatr, 18(1), 189.CrossRef
13.
Brouwer, W. B., van Exel, N. J., van den Berg, B., van den Bos, G. A., & Koopmanschap, M. A. (2005). Process utility from providing informal care: The benefit of caring. Health Policy, 74(1), 85–99.CrossRef
14.
Yu, D. S. F., Cheng, S.-T., & Wang, J. (2018). Unravelling positive aspects of caregiving in dementia: An integrative review of research literature. International Journal of Nursing Studies, 79, 1–26.CrossRef
15.
Schulz, R., & Beach, S. R. (1999). Caregiving as a risk factor for mortality: The caregiver health effects study. JAMA, 282(23), 2215–2219.CrossRef
16.
Chisholm, D., & Evans, D. B. (2007). Economic evaluation in health: Saving money or improving care? Journal of Medical Economics, 10(3), 325–337.CrossRef
17.
Krol, M., Papenburg, J., & van Exel, J. (2015). Does including informal care in economic evaluations matter? A systematic review of inclusion and impact of informal care in cost-effectiveness studies. Pharmacoeconomics, 33(2), 123–135.CrossRef
18.
Brouwer, W. B., van Exel, N. J., van Gorp, B., & Redekop, W. K. (2006). The CarerQol instrument: a new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Quality of Life Research, 15(6), 1005–1021.CrossRef
19.
Payakachat, N., Tilford, J. M., Brouwer, W. B., van Exel, N. J., & Grosse, S. D. (2011). Measuring health and well-being effects in family caregivers of children with craniofacial malformations. Quality of Life Research, 20(9), 1487–1495.CrossRef
20.
Pangalila, R. F., van den Bos, G. A., Stam, H. J., van Exel, N. J., Brouwer, W. B., & Roebroeck, M. E. (2012). Subjective caregiver burden of parents of adults with Duchenne muscular dystrophy. Disability and Rehabilitation, 34(12), 988–996.CrossRef
21.
Hoefman, R., Payakachat, N., van Exel, J., Kuhlthau, K., Kovacs, E., Pyne, J., et al. (2014). Caring for a child with autism spectrum disorder and parents' quality of life: application of the CarerQol. Journal of Autism and Developmental Disorders, 44(8), 1933–1945.PubMedPubMedCentral
22.
Hoefman, R., Al-Janabi, H., McCaffrey, N., Currow, D., & Ratcliffe, J. (2015). Measuring caregiver outcomes in palliative care: A construct validation study of two instruments for use in economic evaluations. Quality of Life Research, 24(5), 1255–1273.CrossRef
23.
Hoefman, R. J., van Exel, N. J., Looren de Jong, S., Redekop, W. K., & Brouwer, W. B. (2011). A new test of the construct validity of the CarerQol instrument: measuring the impact of informal care giving. Quality of Life Research, 20(6), 875–887.CrossRef
24.
Hoefman, R. J., van Exel, J., & Brouwer, W. B. F. (2013). Measuring the impact of caregiving on informal carers: A construct validation study of the CarerQol instrument. Health and Quality of Life Outcomes, 11(1), 173.CrossRef
25.
Baji, P., Farkas, M., Golicki, D., Prevolnik Rupel, V., Hoefman, R., Brouwer, W. B. F., et al. (2020). Development of population tariffs for the CarerQol instrument for Hungary, Poland and Slovenia: A discrete choice experiment study to measure the burden of informal caregiving. Pharmacoeconomics., 38(6), 633–643.CrossRef
26.
Kraijo, H., van Exel, J., & Brouwer, W. (2015). The perseverance time of informal carers for people with dementia: Results of a two-year longitudinal follow-up study. BMC Nurs, 14, 56.CrossRef
27.
28.
Kerpershoek, L., de Vugt, M., Wolfs, C., Jelley, H., Orrell, M., Woods, B., et al. (2016). Access to timely formal dementia care in Europe: Protocol of the actifcare (ACcess to Timely Formal Care) study. BMC Health Serv Res, 16(1), 423.CrossRef
29.
Hoefman, R. J., van Exel, J., & Brouwer, W. B. F. (2017). Measuring care-related quality of life of caregivers for use in economic evaluations: CarerQol tariffs for Australia, Germany, Sweden, UK, and US. PharmacoEconomics, 35(4), 469–478.CrossRef
30.
Handels, R. L. H., Skoldunger, A., Bieber, A., Edwards, R. T., Goncalves-Pereira, M., Hopper, L., et al. (2018). Quality of life, care resource use, and costs of Dementia in 8 European Countries in a cross-sectional cohort of the actifcare study. J Alzheimers Dis, 66(3), 1027–1040.CrossRef
31.
Hoefman, R. J., van Exel, J., Rose, J. M., van de Wetering, E. J., & Brouwer, W. B. (2014). A discrete choice experiment to obtain a tariff for valuing informal care situations measured with the CarerQol instrument. Medical Decision Making, 34(1), 84–96.CrossRef
32.
Proud, L., McLoughlin, C., & Kinghorn, P. (2019). ICECAP-O, the current state of play: a systematic review of studies reporting the psychometric properties and use of the instrument over the decade since its publication. Quality of Life Research, 28(6), 1429–1439.CrossRef
33.
Coast, J., Peters, T. J., Natarajan, L., Sproston, K., & Flynn, T. (2008). An assessment of the construct validity of the descriptive system for the ICECAP capability measure for older people. Quality of Life Research, 17(7), 967–976.CrossRef
34.
Perry-Duxbury, M., van Exel, J., Brouwer, W., Sköldunger, A., Gonçalves-Pereira, M., Irving, K., et al. (2020). A validation study of the ICECAP-O in informal carers of people with dementia from eight European Countries. Quality of Life Research, 29(1), 237–251.CrossRef
35.
Herdman, M., Gudex, C., Lloyd, A., Janssen, M., Kind, P., Parkin, D., et al. (2011). Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Quality of Life Research, 20(10), 1727–1736.CrossRef
36.
Coast, J., Flynn, T. N., Natarajan, L., Sproston, K., Lewis, J., Louviere, J. J., et al. (2008). Valuing the ICECAP capability index for older people. Social Science and Medicine, 67(5), 874–882.CrossRef
37.
38.
Hughes, C. P., Berg, L., Danziger, W. L., Coben, L. A., & Martin, R. L. (1982). A new clinical scale for the staging of dementia. The British Journal of Psychiatry, 140(6), 566–572.CrossRef
39.
Folstein, M. F., Folstein, S. E., & McHugh, P. R. (1975). "Mini-mental state". A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12(3), 189–198.CrossRef
40.
Cummings, J. L., Mega, M., Gray, K., Rosenberg-Thompson, S., Carusi, D. A., & Gornbein, J. (1994). The neuropsychiatric inventory: Comprehensive assessment of psychopathology in dementia. Neurology, 44(12), 2308–2314.CrossRef
41.
Lawton, M. P., & Brody, E. M. (1969). Assessment of older people: Self-maintaining and instrumental activities of daily living. Gerontologist, 9(3), 179–186.CrossRef
42.
Reynolds, T., Thornicroft, G., Abas, M., Woods, B., Hoe, J., Leese, M., et al. (2000). Camberwell assessment of need for the elderly (CANE). development, validity and reliability. British Journal of Psychiatry, 176, 444–452.CrossRef
43.
Wimo, A., Gustavsson, A., Jonsson, L., Winblad, B., Hsu, M. A., & Gannon, B. (2013). Application of resource utilization in Dementia (RUD) instrument in a global setting. Alzheimers Dement, 9(4), 429–435.e417.CrossRef
44.
Cohen, J. (1988). Set correlation and contingency tables. Applied Psychological Measurement, 12(4), 425–434.CrossRef
45.
StataCorp., (2019). Statistical Software: Release 16: College Station. TX: StataCorp LLC.
46.
Metadata
Title
A validation study of the CarerQol instrument in informal caregivers of people with dementia from eight European countries
Authors
Daphne C. Voormolen
Job van Exel
Werner Brouwer
Anders Sköldunger
Manuel Gonçalves-Pereira
Kate Irving
Anja Bieber
Geir Selbaek
Bob Woods
Orazio Zanetti
Frans Verhey
Anders Wimo
Ron L. H. Handels
the Actifcare Consortium
Publication date
01-02-2021
Publisher
Springer International Publishing
Published in
Quality of Life Research / Issue 2/2021
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-020-02657-5

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