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Measuring caregiver outcomes in palliative care: a construct validation study of two instruments for use in economic evaluations.
Qual Life Res 2015; 24(5):1255-73QL

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.

Authors+Show Affiliations

Institute for Health Policy and Management, Erasmus University Rotterdam, P.O. Box 1738, 3000 DR, Rotterdam, The Netherlands, hoefman@bmg.eur.nl.No affiliation info availableNo affiliation info availableNo affiliation info availableNo affiliation info available

Pub Type(s)

Journal Article
Validation Studies

Language

eng

PubMed ID

25381122

Citation

Hoefman, Renske, et al. "Measuring Caregiver Outcomes in Palliative Care: a Construct Validation Study of Two Instruments for Use in Economic Evaluations." Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, vol. 24, no. 5, 2015, pp. 1255-73.
Hoefman R, Al-Janabi H, McCaffrey N, et al. Measuring caregiver outcomes in palliative care: a construct validation study of two instruments for use in economic evaluations. Qual Life Res. 2015;24(5):1255-73.
Hoefman, R., Al-Janabi, H., McCaffrey, N., Currow, D., & Ratcliffe, J. (2015). Measuring caregiver outcomes in palliative care: a construct validation study of two instruments for use in economic evaluations. Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 24(5), pp. 1255-73. doi:10.1007/s11136-014-0848-8.
Hoefman R, et al. Measuring Caregiver Outcomes in Palliative Care: a Construct Validation Study of Two Instruments for Use in Economic Evaluations. Qual Life Res. 2015;24(5):1255-73. PubMed PMID: 25381122.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Measuring caregiver outcomes in palliative care: a construct validation study of two instruments for use in economic evaluations. AU - Hoefman,Renske, AU - Al-Janabi,Hareth, AU - McCaffrey,Nikki, AU - Currow,David, AU - Ratcliffe,Julie, Y1 - 2014/11/08/ PY - 2014/10/31/accepted PY - 2014/11/9/entrez PY - 2014/11/9/pubmed PY - 2015/8/1/medline SP - 1255 EP - 73 JF - Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation JO - Qual Life Res VL - 24 IS - 5 N2 - 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. SN - 1573-2649 UR - https://www.unboundmedicine.com/medline/citation/25381122/Measuring_caregiver_outcomes_in_palliative_care:_a_construct_validation_study_of_two_instruments_for_use_in_economic_evaluations_ L2 - https://doi.org/10.1007/s11136-014-0848-8 DB - PRIME DP - Unbound Medicine ER -