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

Daphne C Voormolen,Anders Wimo,Geir Selbaek,Anja Bieber,Bob Woods,Anders Sköldunger,Ron L H Handels,Job Van Exel,Werner Brouwer,Manuel Gonçalves-Pereira,Frans Verhey,Kate Irving,Orazio Zanetti

doi:10.1007/s11136-020-02657-5

Abstract

PurposeInformal 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.MethodsCross-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.ResultsThe 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.ConclusionThis study demonstrates the convergent and clinical validity of the CarerQol instrument to evaluate the impact of providing informal care for people with dementia.

Highlights

In 2019, the number of people with dementia was estimated at 50 million worldwide, and every 3 s a new case of dementia occurred [1,2,3]
Extended author information available on the last page of the article cure that can alter the course of this disorder or modifying treatment currently available, it is crucial that a caregiving context is created in which people with dementia are supported in their care needs
The aim of this paper was to investigate the convergent and clinical validity of the CarerQol in the context of informal caregivers for people with dementia, using cross-sectional baseline data from eight European countries collected within the Actifcare (Access to TImely Formal care) project [27]

Summary

Introduction

In 2019, the number of people with dementia was estimated at 50 million worldwide, and every 3 s a new case of dementia occurred [1,2,3]. The number of people with dementia is increasing rapidly and will most likely more than triple by 2050 [3, 4]. The worldwide care costs of dementia in 2015 were estimated to be 818 billion dollars [1]. Extended author information available on the last page of the article cure that can alter the course of this disorder or modifying treatment currently available, it is crucial that a caregiving context is created in which people with dementia are supported in their care needs

Objectives

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Results