caa a22 4500 606180109 CHVBK 20210128100804.0 cr unu---uuuuu 210128e20150501xx s 000 0 eng 10.1007/s11136-014-0848-8 doi (NATIONALLICENCE)springer-10.1007/s11136-014-0848-8 Measuring caregiver outcomes in palliative care: a construct validation study of two instruments for use in economic evaluations [Elektronische Daten] [Renske Hoefman, Hareth Al-Janabi, Nikki McCaffrey, David Currow, Julie Ratcliffe] 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. Springer International Publishing Switzerland, 2014 Informal care nationallicence Effects nationallicence Palliative care nationallicence Economic evaluations nationallicence Carer Experience Scale nationallicence CarerQol instrument nationallicence Hoefman Renske Institute for Health Policy and Management, Erasmus University Rotterdam, P.O. Box 1738, 3000 DR, Rotterdam, The Netherlands aut Al-Janabi Hareth Health Economics Unit, University of Birmingham, Birmingham, UK aut McCaffrey Nikki Discipline of Palliative and Supportive Services, Flinders University, Adelaide, Australia aut Currow David Discipline of Palliative and Supportive Services, Flinders University, Adelaide, Australia aut Ratcliffe Julie Flinders Centre for Clinical Change and Health Care Research, Discipline of Palliative and Supportive Services, Flinders University, Adelaide, Australia aut Quality of Life Research Springer International Publishing 24/5(2015-05-01), 1255-1273 0962-9343 24:5<1255 2015 24 11136 https://doi.org/10.1007/s11136-014-0848-8 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s11136-014-0848-8 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Hoefman Renske Institute for Health Policy and Management, Erasmus University Rotterdam, P.O. Box 1738, 3000 DR, Rotterdam, The Netherlands aut NATIONALLICENCE 700 1- Al-Janabi Hareth Health Economics Unit, University of Birmingham, Birmingham, UK aut NATIONALLICENCE 700 1- McCaffrey Nikki Discipline of Palliative and Supportive Services, Flinders University, Adelaide, Australia aut NATIONALLICENCE 700 1- Currow David Discipline of Palliative and Supportive Services, Flinders University, Adelaide, Australia aut NATIONALLICENCE 700 1- Ratcliffe Julie Flinders Centre for Clinical Change and Health Care Research, Discipline of Palliative and Supportive Services, Flinders University, Adelaide, Australia aut NATIONALLICENCE 773 0- Quality of Life Research Springer International Publishing 24/5(2015-05-01), 1255-1273 0962-9343 24:5<1255 2015 24 11136