A new test of the construct validity of the CarerQol instrument: measuring the impact of informal care giving

Hoefman, Renske J.; van Exel, N. Job A.; Looren de Jong, Sandra; Redekop, W. Ken; Brouwer, Werner B. F.

doi:10.1007/s11136-010-9829-8

Cited by 86Health Systems, Economic Evaluations, Quality of LifeNursing care and researchHealth Education and Validation

A new test of the construct validity of the CarerQol instrument: measuring the impact of informal care giving

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Hoefman, Renske J., van Exel, N. Job A., Looren de Jong, Sandra, Redekop, W. Ken, Brouwer, Werner B. F.·2011·Quality of Life Research

DOI 10.1007/s11136-010-9829-8PMC PMC3228404

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Abstract

PURPOSE: Most economic evaluations of health care programmes do not consider the effects of informal care, while this could lead to suboptimal policy decisions. This study investigates the construct validity of the CarerQol instrument, which measures and values carer effects, in a new population of informal caregivers. METHODS: A questionnaire was distributed by mail (n = 1,100, net response rate = 21%) to regional informal care support centers throughout the Netherlands. Two types of construct validity, i.e., convergent and clinical validity, have been analyzed. Convergent validity was assessed with Spearman's correlation coefficients and multivariate correlation between the burden dimensions (CarerQol-7D) and the valuation component (CarerQol-VAS) of the CarerQol. Additionally, convergent validity was analyzed with Spearman's correlation coefficients between the CarerQol and other measures of subjective caregiver burden (SRB, PU). Clinical validity was evaluated with multivariate correlation between CarerQol-VAS and CarerQol-7D, characteristics of caregivers, care recipients and care situation among the whole sample of caregivers and subgroups. RESULTS: The positive (negative) dimensions of CarerQol-7D were positively (negatively) related to CarerQol-VAS, and almost all had moderate strength of convergent validity. CarerQol-VAS was positively associated with PU and negatively with SRB. The CarerQol-VAS reflects differences in important background characteristics of informal care: type of relationship, age of the care recipient and duration of care giving were associated with higher CarerQol-VAS scores. These results confirmed earlier tests of the construct validity of the CarerQol. Furthermore, the dimensions of CarerQol-7D significantly explained differences in CarerQol-VAS scores among subgroups of carers. CONCLUSION: Notwithstanding the limitations of our study, such as the low response rate, this study shows that the CarerQol provides a valid means to measure carer effects for use in economic evaluations. Future research should derive a valuation set for the CarerQol and further address the instrument's content validity, sensitivity and reliability.

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The psychometric properties of the CarerQoL were shown to be satisfactory.
“The psychometric properties of the CarerQol were shown to be satisfactory [48–50].”
From A blended psychosocial support program for partners of patients with amyotrophic lateral sclerosis and progressive muscular atrophy: Protocol of a randomized controlled trial (2018) · cites this paper as [49]
The Conclusion says the study confirmed the CarerQol’s convergent and clinical validity, and the Discussion describes its convergent validity as moderate but not unsatisfactory. The broader claim that its psychometric properties were satisfactory omits an important limit: the Introduction says reliability and sensitivity to change had not yet been established, and the Conclusion calls for further research on them. (LLM, conf=0.86)
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Statistical Power Analysis for the Behavioral Sciences
Muller, K. E., & Cohen, J. (1989) · Technometrics · doi:10.2307/1270020 · Cited by 99,588 · see citing works
Statistical power analysis for the behavioral sciences
Cohen, J. (1990) · Computers Environment and Urban Systems · doi:10.1016/0198-9715(90)90050-4 · Cited by 65,406 · see citing works
EuroQol: a new facility for the measurement of health-related quality of life
(1990) · Health Policy · doi:10.1016/0168-8510(90)90421-9 · Cited by 15,736 · see citing works
Methods for the Economic Evaluation of Health Care Programmes
Drummond, M. E., Sculpher, M. J., Torrance, G. W., O’Brien, B. J., & Stoddart, G. L. (2005) · doi:10.1093/oso/9780198529446.001.0001 · Cited by 13,648 · see citing works
Cost-Effectiveness in Health and Medicine
(1996) · doi:10.1093/oso/9780195108248.001.0001 · Cited by 7,193 · see citing works
Untitled work
(1997) · doi:10.1097/00005650-199711000-00002 · Cited by 4,544 · see citing works
What Can Economists Learn from Happiness Research?
Frey, B. S., & Stutzer, A. (2002) · Journal of Economic Literature · doi:10.1257/002205102320161320 · Cited by 3,783 · see citing works
Caregiving as a Risk Factor for Mortality: The Caregiver Health Effects Study
Schulz, R., & Beach, S. R. (1999) · JAMA · doi:10.1001/jama.282.23.2215 · Cited by 3,340 · cited 1× · see citing works
“It can also lead to social isolation or financial strain, deterioration of a carer’s physical and mental health and even increased mortality risk [2–4].”
Background
Surveys in Social Research
Goyder, J., & de Vaus, D. (1987) · The Canadian Journal of Sociology · doi:10.2307/3340954 · Cited by 2,274 · see citing works
Validation of a Caregiver Strain Index
Robinson, B. C. (1983) · Journal of Gerontology · doi:10.1093/geronj/38.3.344 · Cited by 1,426 · cited 1× · see citing works
“Increased burden measured in terms of the dimensions of the CarerQol-7D was associated with increased burden measured with other burden instruments, such as the Caregiver Strain Index (CSI, [29]) and the Self-rated Burden scale (SRB, [30]).”
Method
Social Surveys
de Vaus, D. (2002) · SAGE Publications Ltd eBooks · doi:10.4135/9781446263495 · Cited by 731 · see citing works
Conditions of Happiness
Veenhoven, R. (1984) · Springer eBooks · doi:10.1007/978-94-009-6432-7 · Cited by 675 · see citing works
The Dutch tariff: results and arguments for an effective design for national EQ‐5D valuation studies
Lamers, L. M., McDonnell, J., Stalmeier, P. F. M., Krabbe, P. F. M., & Busschbach, J. J. V. (2006) · Health Economics · doi:10.1002/hec.1124 · Cited by 625 · see citing works
The CarerQol instrument: A new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations
Brouwer, W. B. F., van Exel, N. J. A., van Gorp, B., & Redekop, W. K. (2006) · Quality of Life Research · doi:10.1007/s11136-005-5994-6 · Cited by 452 · see citing works
Self-citation
Economic valuation of informal care
van den Berg, B., Brouwer, W. B. F., & Koopmanschap, M. A. (2004) · The European Journal of Health Economics · doi:10.1007/s10198-003-0189-y · Cited by 436 · see citing works
Self-citation
An Overview of Methods and Applications to Value Informal Care in Economic Evaluations of Healthcare
Koopmanschap, M. A., van Exel, J. N. A., van den Berg, B., & Brouwer, W. B. F. (2008) · PharmacoEconomics · doi:10.2165/00019053-200826040-00001 · Cited by 262 · see citing works
Self-citation
Caring for and caring about: Disentangling the caregiver effect and the family effect
Bobinac, A., van Exel, J. N. A., Rutten, F., & Brouwer, W. B. F. (2010) · Journal of Health Economics · doi:10.1016/j.jhealeco.2010.05.003 · Cited by 232 · see citing works
Self-citation
Instruments for assessing the burden of informal caregiving for stroke patients in clinical practice: a comparison of CSI, CRA, SCQ and self-rated burden
van Exel, N. J. A., op Reimer, W. J. S., Brouwer, W. B., van den Berg, B., Koopmanschap, M. A., & van den Bos, G. A. (2004) · Clinical Rehabilitation · doi:10.1191/0269215504cr723oa · Cited by 229 · see citing works
Self-citation
Process utility from providing informal care: the benefit of caring
Brouwer, W. B. F., van Exel, J. N. A., van den Berg, B., van den Bos, G. A. M., & Koopmanschap, M. A. (2005) · Health Policy · doi:10.1016/j.healthpol.2004.12.008 · Cited by 213 · see citing works
Self-citation
Economic valuation of informal care: Lessons from the application of the opportunity costs and proxy good methods
van den Berg, B., Brouwer, W. B. F., van Exel, J. N. A., Koopmanschap, M. A., van den Bos, G. A. M., & Rutten, F. (2005) · Social Science & Medicine · doi:10.1016/j.socscimed.2005.06.046 · Cited by 202 · see citing works
Self-citation
Monetary valuation of informal care: the well‐being valuation method
van den Berg, B., & Ada Ferrer-i-carbonell, A. (2007) · Health Economics · doi:10.1002/hec.1224 · Cited by 197 · see citing works
How Important is Methodology for the Estimates of the Determinants of Happiness?
Ada Ferrer-i-carbonell, A., & Frijters, P. (2004) · The Economic Journal · doi:10.1111/j.1468-0297.2004.00235.x · Cited by 163 · see citing works
Burden of Informal Caregiving for Stroke Patients
van Exel, J. N. A., Koopmanschap, M. A., van den Berg, B., Brouwer, W. B. F., & van den Bos, G. A. M. (2004) · Cerebrovascular Diseases · doi:10.1159/000081906 · Cited by 160 · see citing works
Self-citation
Predictors of sense of competence in caregivers of demented persons
Vernooij-Dassen, M. J. F. J., Persoon, J., & Felling, A. (1996) · Social Science & Medicine · doi:10.1016/0277-9536(95)00332-0 · Cited by 151 · see citing works
What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up
Al-Janabi, H., Coast, J., & Flynn, T. N. (2008) · Social Science & Medicine · doi:10.1016/j.socscimed.2008.03.032 · Cited by 143 · see citing works
MEASURING COSTS IN COST-UTILITY ANALYSES
Stone, P. W., Chapman, R. H., Sandberg, E. A., Liljas, B., & Neumann, P. J. (2000) · International Journal of Technology Assessment in Health Care · doi:10.1017/s0266462300161100 · Cited by 126 · see citing works
The economic value of informal care: a study of informal caregivers' and patients' willingness to pay and willingness to accept for informal care
van den Berg, B., Han Bleichrodt, A., & Eeckhoudt, L. (2005) · Health Economics · doi:10.1002/hec.980 · Cited by 125 · see citing works
Economic Evaluation in Child Health
(2009) · doi:10.1093/acprof:oso/9780199547494.001.0001 · Cited by 124 · see citing works
Comparison of the Quality of Assessments Using Continuous and Discrete Ordinal Rating Scales
Svensson, E. (2000) · Biometrical Journal · doi:10.1002/1521-4036(200008)42:4 · Cited by 122 · see citing works
Assessment of Burden in Partners of Stroke Patients With the Sense of Competence Questionnaire
Reimer, W. J. M. S. O., de Haan, R. J., Pijnenborg, J. M. A., Limburg, M., & van den Bos, G. A. M. (1998) · Stroke · doi:10.1161/01.str.29.2.373 · Cited by 112 · see citing works
Give me a break!
van Exel, J. N. A., de Graaf, G., & Brouwer, W. B. F. (2008) · Health Policy · doi:10.1016/j.healthpol.2008.03.001 · Cited by 100 · see citing works
Self-citation
What really matters: an inquiry into the relative importance of dimensions of informal caregiver burden
van Exel, J. N. A., Brouwer, W. B. F., van den Berg, B., Koopmanschap, M., & van den Bos, G. A. M. (2004) · Clinical Rehabilitation · doi:10.1191/0269215504cr743oa · Cited by 83 · see citing works
Self-citation
Respite care—An explorative study of demand and use in Dutch informal caregivers
van Exel, J. N. A., Morée, M., Koopmanschap, M. A., Goedheijt, T. S., & Brouwer, W. B. F. (2005) · Health Policy · doi:10.1016/j.healthpol.2005.11.002 · Cited by 78 · see citing works
Self-citation
The value of informal care–a further investigation of the feasibility of contingent valuation in informal caregivers
de Meijer, C. A. M., Brouwer, W. B. F., Koopmanschap, M. A., van den Berg, B., & van Exel, J. N. A. (2009) · Health Economics · doi:10.1002/hec.1513 · Cited by 75 · see citing works
Self-citation
ECONOMIC EVALUATION IN CHILD HEALTH
Doyle, L. W. (2011) · Journal of Paediatrics and Child Health · doi:10.1111/j.1440-1754.2011.02010.x · Cited by 72 · see citing works
Incorporating caregiver and family effects in economic evaluations of child health
Brouwer, W. B. F., van Exel, J. N. A., & Tilford, J. M. (2009) · doi:10.1093/acprof:oso/9780199547494.003.03 · Cited by 56 · see citing works
Self-citation
Economic Valuation of Informal Care: Conjoint Analysis Applied in a Heterogeneous Population of Informal Caregivers
van den Berg, B., Al, M., van Exel, J. N. A., Koopmanschap, M. A., & Brouwer, W. B. F. (2008) · Value in Health · doi:10.1111/j.1524-4733.2008.00357.x · Cited by 45 · see citing works
Self-citation
Providing Systematic Guidance in Pharmacoeconomic Guidelines for Analysing Costs
Jacobs, P., Ohinmaa, A. E., & Brady, B. (2005) · PharmacoEconomics · doi:10.2165/00019053-200523020-00006 · Cited by 38 · see citing works

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[13]National Institute for Clinical Excellence Guide to the methods of technology appraisal 2008 London NICE 27905712
[14]National Institute for Clinical Excellence. (2009). NICE technology appraisal guidance 111. Donepezil, galantamine, rivastigmine (review) and memantine for the treatment of Alzheimer’s disease (amended). London: NICE.

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Carlozzi, N. E., Lombard, W. L., Fansher, M., Freeman, J. L., Capellari, E. C., GRAVES, C. M., Miner, J. A., Hampstead, B. M., Lai, J., & Leggett, A. N. (2026) · Frontiers in Dementia · doi:10.3389/frdem.2026.1824829 · Cited by 1 · see citing works
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Christie, H. L., Dam, A. E. H., van Boxtel, M. P. J., Köhler, S., Verhey, F. R. J., & de Vugt, M. E. (2022) · doi:10.2196/preprints.38656
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Thongthammarat, Y. (2019) · doi:10.58837/chula.the.2019.477
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Integrating intangible costs into societal cost estimates of Alzheimer's disease
Monfared, A. A. T., Hummel, N., Kopiec, A., Chandak, A. N., Khachatryan, A., Gao, R., Zhang, R. J., & Zhang, Q. (2025) · Journal of Alzheimer s Disease · doi:10.1177/13872877251351591
Additional file 1 of Study protocol: group-based psychoeducation for relatives of patients with bipolar disorder—a large scale real-world randomized controlled parallel group trial, the R-bipolar RCT
Stokholm, J. R., Vinberg, M., Faurholt‐Jepsen, M., & Kessing, L. V. (2024) · Figshare · doi:10.6084/m9.figshare.26724761
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Norheim, I., Røssberg, J. I., Selle, M. L., Woodberry, K. A., O’Brien, M. P., Pedersen, R., Hestmark, L., Fosse, R., Hansson, K. M., Heiervang, K. S., et al. (2026) · BMC Psychiatry · doi:10.1186/s12888-026-07868-7
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Chow, A., Jordán, I., Pallone, N., Smith, M. P., Chakraborty, P. K., Brehaut, J., Chan, A. K. J., Cohen, E., Dyack, S., Graham, I. D., et al. (2026) · Orphanet Journal of Rare Diseases · doi:10.1186/s13023-026-04434-y
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New Test of the Construct Validity of the CarerQol Instrument: Measuring the Impact of Informal Care Giving. Copyright: Hoefman, R. J.; van Exel, N. J.; Looren de Jong, S.; Redekop, W. K.; Brouwer, W. B.
Hoefman, R., Exel, N. V., LoorendeJong, S., Redekop, K., & Brouwer, W. B. (2011) · Open Scholarship Institutional Repository (Washington University in St. Louis)
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Measuring the impact of caregiving on informal carers: a construct validation study of the CarerQol instrument
Hoefman, R. J., van Exel, J., & Brouwer, W. B. (2013) · Health and Quality of Life Outcomes · doi:10.1186/1477-7525-11-173 · Cited by 101 · see citing works
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Dementia Caregiving: the construct validity of the CarerQol instrument to measure the impact of informal care among caregivers of dementia patients.
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Sustained informal care: The feasibility, construct validity and test–retest reliability of the CarerQol-instrument to measure the impact of informal care in long-term care
Hoefman, R., van Exel, J. N. A., Foets, M., & Brouwer, W. B. F. (2011) · Aging & Mental Health · doi:10.1080/13607863.2011.575351 · Cited by 71 · see citing works
Self-citation
The CarerQol instrument: A new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations
Brouwer, W. B. F., van Exel, N. J. A., van Gorp, B., & Redekop, W. K. (2006) · Quality of Life Research · doi:10.1007/s11136-005-5994-6 · Cited by 452 · see citing works
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Authors: Hoefman, R. J., van Exel, N. J. A., Looren de Jong, S., Redekop, W. K., & Brouwer, W. B. F.
Affiliations: Erasmus University Rotterdam (NL)
Corresponding author: Hoefman, Renske J.
ORCID: Hoefman, Renske J.
Brouwer, Werner B. F.
Venue: Quality of Life Research
Publisher: Springer Science and Business Media LLC
Published: 2011-01-01
Volume: 20
Issue: 6
Pages: 875-887
ISSN: 0962-9343 (ISSN-L)
1573-2649
DOI: 10.1007/s11136-010-9829-8
PMC: PMC3228404
OpenAlex: W2155355750
Cited by: 86
References: 40
Citations by year: 2026: 5 · 2025: 4 · 2024: 6 · 2023: 6 · 2022: 7 · 2021: 4 · 2020: 7 · 2019: 6 · 2018: 6 · 2017: 6 · 2016: 5 · 2015: 6 · 2014: 7 · 2013: 6 · 2012: 2
FWCI: 8.27
Type: journal article
Language: en
Open access: hybrid
doi.org
Licence: cc-by-nc
creativecommons.org/licenses/by-nc/2.0 (tdm)
Locations: Quality of Life Research (publishedVersion, cc-by-nc)
Europe PMC (PubMed Central) (publishedVersion, cc-by-nc)
PubMed Central (publishedVersion, cc-by-nc)
PubMed (publishedVersion)
EUR Research Repository (Erasmus University Rotterdam) (publishedVersion, other-oa)
EUR Research Repository (Erasmus University Rotterdam) (submittedVersion, other-oa)
RePub (Erasmus University Rotterdam) (submittedVersion, other-oa)
RePub (Erasmus University Rotterdam) (submittedVersion)
Funders: ZonMw
Topics: Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
Health Sciences › Health Professions › Pharmacy › Nursing care and research
Social Sciences › Education › Health Education and Validation
Keywords: informal caregivers, construct validity, convergent validity, clinical validity, caregiver burden, economic evaluation, health-related quality of life, informal care
MeSH terms: Female, Happiness, Health Status Indicators, Humans, Male, Middle Aged, Netherlands, Psychometrics, Quality of Life, Reproducibility of Results, Multivariate Analysis, Caregivers, Statistics, Nonparametric

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A new test of the construct validity of the CarerQol instrument: measuring the impact of informal care giving

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