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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.
vorige artikel A confirmatory factor analysis of the Resilience Scale adapted to chronic pain (RS-18): new empirical evidence of the protective role of resilience on pain adjustment
volgende artikel Cultural adaptation and psychometric assessment of Pain Catastrophizing Scale among young healthy Malay-speaking adults in military settings
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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.
 
Literatuur
1.
Bobinac, A., Van Exel, N. J., Rutten, F. F., & Brouwer, W. B. (2010). Caring for and caring about: Disentangling the caregiver effect and the family effect. Journal of Health Economics, 29(4), 549–556. CrossRefPubMed
2.
Bobinac, A., van Exel, N., Rutten, F. F. H., & Brouwer, W. B. F. (2011). Health effects in significant others. Medical Decision Making, 31(2), 292. CrossRefPubMed
3.
Schulz, R., Mendelsohn, A. B., Haley, W. E., Mahoney, D., Allen, R. S., Zhang, S., et al. (2003). End-of-life care and the effects of bereavement on family caregivers of persons with dementia. New England Journal of Medicine, 349(20), 1936–1942. CrossRefPubMed
4.
Proot, I. M., Abu-Saad, H. H., Crebolder, H. F., Goldsteen, M., Luker, K. A., & Widdershoven, G. A. (2003). Vulnerability of family caregivers in terminal palliative care at home; balancing between burden and capacity. Scandinavian Journal of Caring Sciences, 17(2), 113–121. CrossRefPubMed
5.
Waldrop, D. P., Kramer, B. J., Skretny, J. A., Milch, R. A., & Finn, W. (2005). Final transitions: Family caregiving at the end of life. Journal of Palliative Medicine, 8(3), 623–638. CrossRefPubMed
6.
Zapart, S., Kenny, P., Hall, J., Servis, B., & Wiley, S. (2007). Home-based palliative care in Sydney, Australia: The carer’s perspective on the provision of informal care. Health and Social Care in the Community, 15(2), 97–107. PubMed
7.
Grunfeld, E., Coyle, D., Whelan, T., Clinch, J., Reyno, L., Earle, C. C., et al. (2004). Family caregiver burden: Results of a longitudinal study of breast cancer patients and their principal caregivers. Canadian Medical Association Journal, 170(12), 1795–1801. CrossRefPubMedCentralPubMed
8.
Given, B., Wyatt, G., Given, C., Sherwood, P., Gift, A., DeVoss, D., et al. (2004). Burden and depression among caregivers of patients with cancer at the end of life. Oncology Nursing Forum, 31(6), 1105–1117. CrossRefPubMedCentralPubMed
9.
Corà, A., Partinico, M., Munafò, M., & Palomba, D. (2012). Health risk factors in caregivers of terminal cancer patients: A pilot study. Cancer Nursing, 35(1), 38–47. CrossRefPubMed
10.
Currow, D. C., Burns, C., Agar, M., Phillips, J., McCaffrey, N., & Abernethy, A. P. (2011). Palliative caregivers who would not take on the caring role again. Journal of Pain and Symptom Management, 41(4), 661–672. CrossRefPubMed
11.
Teno, J. M., Clarridge, B. R., Casey, V., Welch, L. C., Wetle, T., Shield, R., et al. (2004). Family perspectives on end-of-life care at the last place of care. JAMA: The Journal of the American Medical Association, 291(1), 88–93. CrossRef
12.
Andershed, B. (2006). Relatives in end-of-life care—part 1: A systematic review of the literature the five last years, January 1999–February 2004. Journal of Clinical Nursing, 15(9), 1158–1169. CrossRefPubMed
13.
Ratcliffe, J., Lester, L. H., Couzner, L., & Crotty, M. (2013). An assessment of the relationship between informal caring and quality of life in older community-dwelling adults–more positives than negatives? Health and Social Care in the Community, 21(1), 35–46. CrossRefPubMed
14.
Kang, J., Shin, D. W., Choi, J. E., Sanjo, M., Yoon, S. J., Kim, H. K., et al. (2013). Factors associated with positive consequences of serving as a family caregiver for a terminal cancer patient. Psycho-oncology, 22, 564–571. CrossRefPubMed
15.
McGuire, D. B., Grant, M., & Park, J. (2012). Palliative care and end of life: The caregiver. Nursing Outlook, 60(6), 351–356. CrossRefPubMed
16.
Mularski, R. A., Dy, S. M., Shugarman, L. R., Wilkinson, A. M., Lynn, J., Shekelle, P. G., et al. (2007). A systematic review of measures of end-of-life care and its outcomes. Health Services Research, 42(5), 1848–1870. CrossRefPubMedCentralPubMed
17.
Ringdal, G. I., Jordhøy, M. S., & Kaasa, S. (2002). Family satisfaction with end-of-life care for cancer patients in a cluster randomized trial. Journal of Pain and Symptom Management, 24(1), 53–63. CrossRefPubMed
18.
Teno, J. M. (2005). Measuring end-of-life care outcomes retrospectively. Journal of Palliative Medicine, 8(Supplement 1), s-42–s-49. CrossRef
19.
Aoun, S., Bird, S., Kristjanson, L. J., & Currow, D. (2010). Reliability testing of the FAMCARE-2 scale: Measuring family carer satisfaction with palliative care. Palliative Medicine, 24(7), 674–681. CrossRefPubMed
20.
Gough, K., & Hudson, P. (2009). Psychometric properties of the Hospital Anxiety and Depression Scale in family caregivers of palliative care patients. Journal of Pain and Symptom Management, 37(5), 797–806. CrossRefPubMed
21.
Van Exel, J., Bobinac, A., Koopmanschap, M., & Brouwer, W. (2008). The invisible hands made visible: Recognizing the value of informal care in healthcare decision-making. Expert review of Pharmacoeconomics & Outcomes Research, 8(6), 557–561. CrossRef
22.
Van Exel, J., de Graaf, G., & Brouwer, W. (2008). Give me a break! Informal caregiver attitudes towards respite care. Health Policy, 88(1), 73–87. CrossRefPubMed
23.
Van Exel, N. J., Brouwer, W. B., Van den Berg, B., Koopmanschap, M. A., & Van den Bos, G. A. (2004). What really matters: An inquiry into the relative importance of dimensions of informal caregiver burden. Clinical Rehabilitation, 18(6), 683–693. CrossRefPubMed
24.
Koopmanschap, M. A., Van Exel, J. N., Van den Berg, B., & Brouwer, W. B. (2008). An overview of methods and applications to value informal care in economic evaluations of healthcare. Pharmacoeconomics, 26(4), 269–280. CrossRefPubMed
25.
Steinhauser, K. E. (2005). Measuring end-of-life care outcomes prospectively. Journal of Palliative Medicine, 8(supplement 1), s-30–s-41. CrossRef
26.
van Campen, C., de Boer, A. H., & Iedema, J. (2013). Are informal caregivers less happy than noncaregivers? Happiness and the intensity of caregiving in combination with paid and voluntary work. Scandinavian Journal of Caring Sciences, 27, 44–50. CrossRefPubMed
27.
Brouwer, W. B. F., Van Exel, N. J. A., & Tilford, M. J. (2010). Incorporating caregiver and family effects in economic evaluations of child health. In W. J. Ungar (Ed.), Economic evaluation in child health. Oxford: Oxford University Press.
28.
Deeken, J. F., Taylor, K. L., Mangan, P., Yabroff, K. R., & Ingham, J. M. (2003). Care for the caregivers: A review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers. Journal of Pain and Symptom Management, 26(4), 922–953. CrossRefPubMed
29.
Van Exel, N. J., Scholte op Reimer, W. J., Brouwer, W. B., Van den Berg, B., Koopmanschap, M. A., & Van den Bos, G. A. (2004). Instruments for assessing the burden of informal caregiving for stroke patients in clinical practice: A comparison of CSI, CRA, SCQ and self-rated burden. Clinical Rehabilitation, 18(2), 203–214. CrossRefPubMed
30.
Van Durme, T., Macq, J., Jeanmart, C., & Gobert, M. (2012). Tools for measuring the impact of informal caregiving of the elderly: A literature review. International Journal of Nursing Studies, 49(4), 490–504. CrossRefPubMed
31.
Travis, S. S., Bernard, M. A., McAuley, W. J., Thornton, M., & Kole, T. (2003). Development of the family caregiver medication administration Hassles scale. The Gerontologist, 43(3), 360–368. CrossRefPubMed
32.
Robinson, B. C. (1983). Validation of a Caregiver Strain Index. Journal of Gerontology, 38(3), 344–348. CrossRefPubMed
33.
Given, C. W., Given, B., Stommel, M., Collins, C., King, S., & Franklin, S. (1992). The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Research in Nursing & Health, 15(4), 271–283. CrossRef
34.
Cameron, J. I., Franche, R., Cheung, A. M., & Stewart, D. E. (2002). Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer, 94(2), 521–527. CrossRefPubMed
35.
Salmon, J. R., Kwak, J., Acquaviva, K. D., Egan, K. A., & Brandt, K. E. (2005). Validation of the caregiving at life’s end questionnaire. American Journal of Hospice and Palliative Medicine, 22(3), 188–194. CrossRefPubMed
36.
Ferrario, S. R., Baiardi, P., & Zotti, A. M. (2004). Update on the Family Strain Questionnaire: A tool for the general screening of caregiving-related problems. Quality of Life Research, 13(8), 1425–1434. CrossRef
37.
Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 20(6), 649–655. CrossRefPubMed
38.
National Institute for Clinical Excellence (NICE). (2008). Guide to the methods of technology appraisal. London.
39.
Pharmaceutical Benefits Advisory Committee. (2013). Guidelines for preparing submissions to the Pharmaceutical Benefits Advisory Committee (Version 4.4).
40.
Brouwer, W. B., & Koopmanschap, M. A. (2000). On the economic foundations of CEA. Ladies and gentlemen, take your positions! Journal of Health Economics, 19(4), 439–459. CrossRefPubMed
41.
Gold, M. R., Siegel, J. E., Russell, L. B., & Weinstein, M. (1996). Cost-effectiveness in health and medicine. New York: Oxford University Press.
42.
Brouwer, W. B., Van Exel, N. J., Van den Berg, B., Van den Bos, G. A., & Koopmanschap, M. A. (2005). Process utility from providing informal care: The benefit of caring. Health Policy, 74(1), 85–99. CrossRefPubMed
43.
Al-Janabi, H., Coast, J., & Flynn, T. N. (2008). What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up. Social Science and Medicine, 67(1), 111–121. CrossRefPubMed
44.
Al-Janabi, H., Flynn, T. N., & Coast, J. (2011). Estimation of a preference-based Carer Experience Scale. Medical Decision Making, 3(3), 458–468.
45.
Brouwer, W. B., Van Exel, N. J., Van Gorp, B., & Redekop, W. K. (2006). The CarerQol instrument: A new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Quality of Life Research, 15(6), 1005–1021. CrossRefPubMed
46.
Hoefman, R. J., Van Exel, N. J. A., Rose, J. M., Lawerman-van de Wetering, E. J., & Brouwer, W. B. F. (2014). A discrete choice experiment to obtain a tariff for valuing informal care situations measured with the CarerQol instrument. Medical Decision Making, 34(1), 84–96. CrossRefPubMed
47.
48.
Hoefman, R. J., van Exel, J., & Brouwer, W. (2013). How to include informal care in economic evaluations. Pharmacoeconomics, 31(12), 1105–1119. CrossRefPubMed
49.
Goranitis, I., Coast, J., & Al-Janabi, H. (2014). An investigation into the construct validity of the Carer Experience Scale (CES). Quality of Life Research, pp. 1–10.
50.
Hoefman, R. J., Van Exel, N. J. A., Redekop, W. K., Looren-de Jong, S., & Brouwer, W. B. F. (2011). A new test of the validity of the CarerQol instrument: Measuring ‘care-related quality of life’ of informal caregivers for use in economic evaluations. Quality of Life Research, 20(6), 875–887. CrossRefPubMedCentralPubMed
51.
Hoefman, R. J., van Exel, N. J. A., Foets, M., & Brouwer, W. B. F. (2011). Sustained informal care: The feasibility, construct validity and test–retest reliability of the CarerQol-instrument to measure the impact of informal care in long-term care. Aging & Mental Health, 15(8), 1018–1027. CrossRef
52.
Hoefman, R. J., van Exel, J., & Brouwer, W. B. (2013). Measuring the impact of caregiving on informal carers: A construct validation study of the CarerQol instrument. Health and quality of life outcomes, 11(1), 173–186.
53.
EuroQol Group. (1990). EuroQol—a new facility for the measurement of health-related quality of life. Health Policy, 16(3), 199–208. CrossRef
54.
Viney, R., Norman, R., King, M. T., Cronin, P., Street, D. J., Knox, S., et al. (2011). Time trade-off derived EQ-5D weights for Australia. Value in Health, 14(6), 928–936. CrossRefPubMed
55.
Al-Janabi, H., Frew, E., Brouwer, W., Rappange, D., & Van Exel, J. (2010). The inclusion of positive aspects of caring in the Caregiver Strain Index: Tests of feasibility and validity. International Journal of Nursing Studies, 47(8), 984–993. CrossRefPubMed
56.
Rubio, D. M., Berg-Weger, M., & Tebb, S. S. (1999). Assessing the validity and reliability of well-being and stress in family caregivers. Social Work Research, 23(1), 54–64. CrossRef
57.
Visser-Meily, J. M., Post, M. W., Riphagen, I. I., & Lindeman, E. (2004). Measures used to assess burden among caregivers of stroke patients: A review. Clinical Rehabilitation, 18(6), 601–623. CrossRefPubMed
58.
Post, M. W., Festen, H., van de Port, I. G., & Visser-Meily, J. M. (2007). Reproducibility of the Caregiver Strain Index and the caregiver reaction assessment in partners of stroke patients living in the Dutch community. Clinical Rehabilitation, 21(11), 1050–1055. CrossRefPubMed
59.
Streiner, D. L., & Norman, G. R. (2003). Health measurement scales: A practical guide to their development and use. Oxford: Oxford University Press.
60.
Al-Janabi, H. (2009). Measurement and valuation of the caring experience for economic evaluation. Ph.D. Dissertation, University of Bristol.
61.
62.
Brazier, J., Ratcliffe, J., Salomon, J. A., & Tsuchiya, A. (2007). Measuring and valuing health benefits for economic evaluation. Oxford; New York: Oxford University Press.
63.
Al-Janabi, H., Flynn, T. N., & Coast, J. (2011). QALYs and carers. Pharmacoeconomics, 29(12), 1015–1023. CrossRefPubMed
64.
Burns, C. M., Abernethy, A. P., Dal Grande, E., & Currow, D. C. (2013). Uncovering an invisible network of direct caregivers at the end of life: A population study. Palliative Medicine, 27(7), 608–615. CrossRefPubMed
65.
Wittenberg, E., Ritter, G. A., & Prosser, L. A. (2013). Evidence of spillover of illness among household members EQ-5D Scores from a US sample. Medical Decision Making, 33(2), 235–243. CrossRefPubMedCentralPubMed
66.
Holmes, A. M., & Deb, P. (2003). The effect of chronic illness on the psychological health of family members. Journal of Mental Health Policy and Economics, 6(1), 13–22. PubMed
67.
Teno, J. M., Casey, V. A., Welch, L. C., & Edgman-Levitan, S. (2001). Patient-focused, family-centered end-of-life medical care: Views of the guidelines and bereaved family members. Journal of Pain and Symptom Management, 22(3), 738–751. CrossRefPubMed
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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