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Quality of Life Research

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Open Access 02-08-2023 | Dementia

Living well while providing support: validation of LTCQ-Carer for assessing informal carers’ quality of life

Authors: Caroline M. Potter, Michele Peters, Maureen Cundell, Rupert McShane, Ray Fitzpatrick

Published in: Quality of Life Research | Issue 12/2023

Abstract

Purpose

Despite international policies to support the health and wellbeing of informal (family) caregivers, there is no consensus on how to evaluate the effectiveness of carer support. We aimed to develop and validate a new quality-of-life measure for carers (LTCQ-Carer) and to assess its potential for use within a clinical pathway.

Methods

Psychometric properties of LTCQ-Carer were tested through cognitive interviews (qualitative phase) and a pilot survey (quantitative phase). Participants were family caregivers of people recently diagnosed with mild cognitive impairment (MCI) or dementia, recruited through one of 14 memory clinics in south-east England. They self-completed the new measure and comparative existing measures (EQ-5D, ASCOT-Carer). Ongoing feedback from memory clinic staff on potential use of LTCQ-Carer was collected.

Results

Interview participants (n = 10) found all draft items of LTCQ-Carer relevant and prompted inclusion of a new item on ‘time to yourself’. Responses from survey participants (n = 107) indicated acceptability (low missing data), high internal reliability (Cronbach’s α = 0.95), and a general construct (single factor loadings 0.43–0.86 for all items). Observation of predicted associations with EQ-5D and ASCOT-Carer supported construct validity. Responsiveness requires further testing as evidence was inconclusive. Clinical staff feedback on potential use was positive.

Conclusion

LTCQ-Carer is a valid new measure for assessing family caregivers’ quality of life across broad health and social care domains, expanding the range of high-quality tools for evaluating carer support. When used concurrently with patient assessment, it could highlight carer needs and prompt appropriate family support at the earliest point in the clinical pathway.

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Title: Living well while providing support: validation of LTCQ-Carer for assessing informal carers’ quality of life
Authors: Caroline M. Potter
Michele Peters
Maureen Cundell
Rupert McShane
Ray Fitzpatrick
Publication date: 02-08-2023
Publisher: Springer International Publishing
Keywords: Dementia
Dementia
Mild Neurocognitive Disorder
Published in: Quality of Life Research / Issue 12/2023
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-023-03485-z

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Living well while providing support: validation of LTCQ-Carer for assessing informal carers’ quality of life

Abstract

Purpose

Methods

Results

Conclusion

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Purpose

Methods

Results

Conclusion

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