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Psychological distress and convergence of own and proxy health-related quality of life in carers of adults with an intellectual disability

Rudra, S; Ali, A; Powell, JM; Hastings, RP; Totsika, V; (2024) Psychological distress and convergence of own and proxy health-related quality of life in carers of adults with an intellectual disability. Journal of Intellectual Disability Research , 68 (1) pp. 74-83. 10.1111/jir.13088. Green open access

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Abstract

BACKGROUND: In adults with an intellectual disability, health-related quality of life (HRQoL) is often measured by proxy report. This cross-sectional study investigated whether the mental health of proxy raters impacts the way they rate HRQoL. METHODS: In this study, 110 carers of adults with an intellectual disability completed measures of psychological distress (Kessler-6) and HRQoL (EQ-5D-3L) about their own HRQoL and that of the care recipient. Differences between HRQoL scores as rated by the carer about themselves and the care recipient were calculated (convergence scores) and multiple regression models were fitted to estimate the association between proxy psychological distress and convergence scores for subjective/objective HRQoL controlling for support needs of the care recipient, carer age and gender of care recipient. RESULTS: There was a significant association between psychological distress and subjective HRQoL convergence scores (r = .92; P = 0.03; 95%; CI: -1.76 to -0.09). There was no association between psychological distress and objective HRQoL convergence scores (r = .01; CI -0.02 to 0.001; P = 0.08). The association between psychological distress and HRQoL scores was no longer present when models did not include convergence scores. CONCLUSIONS: Carers experiencing more psychological distress tended to rate their own and the care recipients' subjective HRQoL more similarly. Objective HRQoL measures did not show this convergence in scores with increasing carer psychological distress. Findings differed when the analysis approach was changed, suggesting the results above require replication in future studies.

Type: Article
Title: Psychological distress and convergence of own and proxy health-related quality of life in carers of adults with an intellectual disability
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1111/jir.13088
Publisher version: https://doi.org/10.1111/jir.13088
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: Adults with intellectual disability, Carers, Health-related quality of life, Learning disability, Measurement, Mental health, Proxy reports
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry > Epidemiology and Applied Clinical Research
URI: https://discovery.ucl.ac.uk/id/eprint/10177882
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