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Gepubliceerd in: Quality of Life Research 5/2015

01-05-2015

Measuring caregiver outcomes in palliative care: a construct validation study of two instruments for use in economic evaluations

Auteurs: Renske Hoefman, Hareth Al-Janabi, Nikki McCaffrey, David Currow, Julie Ratcliffe

Gepubliceerd in: Quality of Life Research | Uitgave 5/2015

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Abstract

Purpose

Providing care to patients nearing the end of life can place a considerable burden on caregivers. Hence, policy decisions on interventions in palliative care should be guided by information on this burden. This study investigates construct validation of two preference-based caregiver outcome instruments suitable for economic evaluations: the Carer Experience Scale (CES) and the Care-related Quality of Life (CarerQol) instrument. Moreover, this study reports caregiver experiences in end-of-life care.

Methods

Data were collected with written questionnaires among caregivers of patients receiving palliative care services in the Southern metropolitan area of Adelaide, South Australia (n = 97). The effect of caregiving on caregivers was measured with the CES, CarerQol, Process Utility (PU) and Caregiver Strain Index (CSI). Convergent, discriminative and clinical validity were studied.

Results

As hypothesized, higher negative effect of caregiving measured on the CES was associated with higher negative effect on the CarerQol. Both the CES and CarerQol were associated in the expected positive direction with less strain from caregiving (CSI), more positive care experiences and more PU from caring. Caregivers’ and care recipients’ health status and duration of caregiving were negatively associated with caring experiences.

Conclusions

Our findings suggest that the CES and CarerQol validly assess the effect of caregiving on caregivers in end-of-life care. Economic evaluations in end-of-life care should attempt to incorporate such instruments to provide a more holistic assessment of the true impact of interventions, especially where family and friends are heavily involved in caregiving.
Bijlagen
Alleen toegankelijk voor geautoriseerde gebruikers
Voetnoten
1
We refer to informal caregivers as ‘caregivers’ in this paper. Professional care is described as ‘formal care’.
 
2
One respondent returned an empty questionnaire, and the other did not define themselves as a caregiver.
 
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Metagegevens
Titel
Measuring caregiver outcomes in palliative care: a construct validation study of two instruments for use in economic evaluations
Auteurs
Renske Hoefman
Hareth Al-Janabi
Nikki McCaffrey
David Currow
Julie Ratcliffe
Publicatiedatum
01-05-2015
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 5/2015
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-014-0848-8

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