Cited by 101Nursing care and researchIntergenerational Family Dynamics and CaregivingFamily Caregiving in Mental Illness

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Measuring the impact of caregiving on informal carers: a construct validation study of the CarerQol instrument

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Hoefman, Renske J, van Exel, Job, Brouwer, Werner BF·2013·Health and Quality of Life Outcomes

DOI 10.1186/1477-7525-11-173PMC PMC4015499

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Abstract

BACKGROUND: Informal caregivers provide a significant part of the total care needed by ill or disabled persons. Although informal care is often the preferred option of those who provide and those who receive informal care, caring can nevertheless be very straining. This study investigates construct validation of an instrument of the impact of caregiving, the CarerQol. METHODS: Data was collected among adult caregivers (n = 1,244) selected from the general population using an online questionnaire in October 2010, in the Netherlands. The CarerQol measures and values the impact of informal care. The CarerQol measures subjective burden (CarerQol-7D) and well-being (CarerQol-VAS). Construct validation comprised clinical, convergent and discriminative validity tests. RESULTS: Clinical validity was supported by statistically significant associations of CarerQol-VAS and caregivers' health, income and employment status, care recipients' health, and the relationship between caregiver and care recipient. Convergent validity was supported by positive associations of CarerQol-VAS with the two positive CarerQol-7D dimensions (fulfillment and support) and negative associations with the five negative CarerQol-7D dimensions (relational problems, mental health problems, problems combining daily activities, financial problems and physical health problems). Moreover, CarerQol-VAS was negatively associated with other instruments measuring caregiving burden. CONCLUSIONS: Construct validity tests in a large, heterogeneous sample of caregivers show that the CarerQol validly measures the impact of caregiving. The CarerQol can be used in informal care research and economic evaluations of health care interventions. Hence, its use can facilitate informed decision making in health care.

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Figure 1 CarerQol instrument[37].CC BY · PubMed Central

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LETOULLEC, E., Gagne, A. L., Leblong, É., Somat, A., & Piette, P. (2025) · Frontiers in Aging · doi:10.3389/fragi.2025.1578911 · Cited by 11
Cost-utility of a new psychosocial goal-setting and manualised support intervention for independence in dementia (NIDUS-Family) versus goal setting and routine care: an economic evaluation embedded within a randomised controlled trial
Isaaq, A., Cooper, C., Vickerstaff, V., Barber, J., Walters, K. R., Lang, I., Rapaport, P., Orgeta, V., Rockwood, K. J., Butler, L. T., et al. (2025) · The Lancet Healthy Longevity · doi:10.1016/j.lanhl.2024.100676 · Cited by 11
“Body & Brain”: effects of a multicomponent exercise intervention on physical and cognitive function of adults with dementia - study protocol for a quasi-experimental controlled trial
Carvalho, J., Borges‐Machado, F., Barros, D. G. M., Sampaio, A., Marques‐Aleixo, I., Bohn, L., Pizarro, A. I. N., Teixeira, L., Magalhães, J., & Ribeiro, Ó. M. (2021) · BMC Geriatrics · doi:10.1186/s12877-021-02104-1 · Cited by 19
“The Care-related Quality of Life instrument (CarerQol) will be used to address subjective burden (CarerQol-7D), and caregivers’ well-being (CarerQol-VAS), using a visual analogue scale to ask about happiness between 0 and 10 (completely happy) [78, 79].”
Method
An Investigation of the Interaction Patterns of Peer Patrons on an Online Peer-Support Portal for Informal Caregivers of Alzheimer’s Patients
Narasimha, S., Wilson, M. K., Dixon, E., Davis, N., & Madathil, K. C. (2019) · Journal of Consumer Health on the Internet · doi:10.1080/15398285.2019.1682757 · Cited by 11
“…has an impact on the physical and mental health, overall wellbeing and social relationships of the informal caregivers (Committee on Family Caregiving for Older Adults 2016; Pleasant et al. 2017; Sch€uz et al. 2015; Cuijpers 2005; Andr en and Elmståhl 2005; Hoefman, van Exel, and Brouwer 2013).”
Background
Effectiveness of an innovative treatment protocol for misophonia in children and adolescents: Design of a randomized controlled trial
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PROTEA study: a protocol for a randomised controlled trial evaluating the efficacy, immune effects and cost-effectiveness of oral bacterial lysate therapy to protect moderate–late preterm infants from respiratory tract infections and wheezing
van Duuren, I. C., Smits, H. H., Duijts, L., Penders, J., & Tramper‐Stranders, G. A. (2024) · ERJ Open Research · doi:10.1183/23120541.00591-2024 · Cited by 8
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“Clinical and convergent validity have also been supported [66].”
Background
Implementation of guidelines on Family Involvement for persons with Psychotic disorders: a pragmatic cluster randomized trial. Effect on relatives’ outcomes and family interventions received
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“Quality of life was assessed using The Care Related Quality of Life questionnaire (CarerQoL) (56).”
Symptom burden in patients with idiopathic multicentric Castleman disease and its impact on daily life: an international patient and caregiver survey
Mukherjee, S., Shupo, F., Wayi-Wayi, G., Zibelnik, N., Jones, E., Mason, N., Franklin, M. K., & Brazier, J. E. (2023) · EClinicalMedicine · doi:10.1016/j.eclinm.2023.102192 · Cited by 7
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What’s important when caring for a loved one? Population-based preference weights for the Adult Social Care Outcomes Toolkit for informal carers (ASCOT-Carer) for Austria
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Validity and Reliability of the EQ-HWB in Parents of Children With Health Conditions
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Psychometric validation and cultural adaptation of the Chinese version of the CarerQol-7D instrument
Xu, R. H., Xu, Y., Zhao, M., Liu, N., Pei, W., Liang, X., & Zhou, L.-M. (2025) · Health and Quality of Life Outcomes · doi:10.1186/s12955-025-02379-7 · Cited by 7
“It is di�cult to determine whether this is a language or technical issue, as few previous studies have reported on the factor structure of the CarerQol-7D, but most of them supported the it is a unidimensional tool by several studies for utility purposes [13, 29, 45].”
Comparison of a home-based (multi) systemic intervention to promoting Medication AdheRence and Self-management among kidney transplant recipients with care-as-usual: the MARS randomized controlled trial protocol
Beck, D. K., Tielen, M., Rechards, M., Timman, R., Boonstra, C., Versteegh, J., van de Wetering, J., Zietse, R., van Gelder, T., Weimar, W. W., et al. (2020) · BMC Nephrology · doi:10.1186/s12882-020-02008-z · Cited by 6
Costs and benefits of investing in transformative care policy packages
Henau, J. D. (2022) · International Labour Office eBooks · doi:10.54394/akyj8893 · Cited by 6
A validation study of the Caregiver Mastery Scale for partners of patients with acquired brain injury
Cox, V. C., Schepers, V. P. M., Ketelaar, M., Kruithof, W. J., Heugten, C. M. V., & Visser‐Meily, J. M. A. (2017) · Clinical Rehabilitation · doi:10.1177/0269215517732821 · Cited by 5
The Burden of a Multiple Myeloma Diagnosis on Patients and Caregivers in the First Year: Western European Findings
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A scoping review of preference-based instruments for measuring carer outcomes in economic evaluations
McCaffrey, N., Engel, L., Karnon, B., Ratcliffe, J., Hoefman, R., Rand, S. E., Al‐Janabi, H., Currow, D. C., Frith, M., & Hutchinson, C. L. (2025) · Social Science & Medicine · doi:10.1016/j.socscimed.2025.118762 · Cited by 4
Self-citation
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Hilton, C., Jones, S. H., Akers, N., Panagaki, K., & Sellwood, W. (2022) · Frontiers in Psychology · doi:10.3389/fpsyg.2022.926981 · Cited by 5
“Based on the COSMIN criteria two out of the three studies scored ‘excellent’ for content validity (Brouwer et al., 2006; Hoefman et al., 2013).”
BackgroundMethod
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“This finding is consistent with the findings of Hoefman et al (2013) that parents with children with disability derive satisfaction from caring for their children.”
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“The quantitative survey data are presented using descriptive statistics and frequency tables to gain an understanding of participants’ scores on the burden dimensions of the CarerQol-7D [32] and overall scores of happiness on the CarerQol-VAS [32].”
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Health‐related quality of life instrument with 8 items to measure health‐related quality of life among family caregivers of people with dementia: A pilot validation study
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“Preferably, these concepts should reflect the lived experiences of informal caregivers and quantify their impact and be employed across a variety of caregiving populations.”
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Carries, S., Mkhwanazi, Z., Sithole, N., Sigwadhi, L. N., Moshabela, M., Nyirenda, M., Goudge, J., Davids, E. L., & Govindasamy, D. (2025) · PLOS Global Public Health · doi:10.1371/journal.pgph.0003799 · Cited by 2
“We postulated that the variance between means would be in the range of 2.3 to 2.6, with a correlation between repeated measurements at baseline versus endline of 0.7 (S4 Table) [30].”
Influential
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“Care-related quality of life (CarerQoL-7D) increased by approximately 13–14 points, exceeding thresholds in prior caregiver research that signal meaningful gains in daily functioning and overall quality of life [68, 69].”
Understanding how informal dementia caregiver networks are assessed in the literature: results from a scoping review
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
Measuring what matters: evaluating the psychometric properties of goal attainment scaling in a psychosocial dementia trial
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Influential
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Lakman, Y. (2015) · Brock University Digital Repository (Brock University) · Cited by 1
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Cox, V. C. (2020) · doi:10.33540/381
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Self-citation
Additional file 2 of Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature
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Additional file 1 of Impact of neurofibromatosis type 1 with plexiform neurofibromas on the health-related quality of life and work productivity of adult patients and caregivers in the UK: a cross-sectional survey
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From a caregiver perspective: Quality of life of children with epilepsy and autism spectrum disorder – a single site case-control study
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Authors: Hoefman, R. J., van Exel, J., & Brouwer, W. B.
Affiliations: Erasmus University Rotterdam (NL)
Corresponding author: Hoefman, Renske J
ORCID: Hoefman, Renske J
Brouwer, Werner BF
Venue: Health and Quality of Life Outcomes
Publisher: Springer Science and Business Media LLC
Published: 2013
Volume: 11
Issue: 1
Pages: 173
ISSN: 1477-7525 (ISSN-L)
DOI: 10.1186/1477-7525-11-173
PMC: PMC4015499
OpenAlex: W2169882001
Cited by: 101
References: 62
Citations by year: 2026: 9 · 2025: 9 · 2024: 5 · 2023: 12 · 2022: 11 · 2021: 9 · 2020: 10 · 2019: 11 · 2018: 8 · 2017: 6 · 2016: 5 · 2015: 4 · 2014: 2
FWCI: 6.96
Type: journal article
Language: en
Open access: gold
doi.org
Licence: cc-by
Locations: Health and Quality of Life Outcomes (publishedVersion, cc-by)
Europe PMC (PubMed Central) (publishedVersion, cc-by)
PubMed Central (publishedVersion, cc-by)
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)
Open Scholarship Institutional Repository (Washington University in St. Louis) (submittedVersion, cc-by)
Topics: Health Sciences › Nursing › Research and Theory › Nursing care and research
Social Sciences › Sociology and Political Science › Intergenerational Family Dynamics and Caregiving
Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
Keywords: informal caregivers, caregiver burden, caregiver well-being, construct validity, subjective burden, quality of life, caregiver-care recipient relationship, financial stress, mental illness
MeSH terms: Adult, Female, Humans, Male, Middle Aged, Netherlands, Quality of Life, Surveys and Questionnaires, Caregivers

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Measuring the impact of caregiving on informal carers: a construct validation study of the CarerQol instrument

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