Skip to main content
SpringerLink
Log in

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

  • Published:
Quality of Life Research Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2
Fig. 3
Fig. 4

Similar content being viewed by others

Notes

  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.

References

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  CAS  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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  Google Scholar 

  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.

    Article  PubMed Central  PubMed  Google Scholar 

  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.

    Article  PubMed Central  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  CAS  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  15. McGuire, D. B., Grant, M., & Park, J. (2012). Palliative care and end of life: The caregiver. Nursing Outlook, 60(6), 351–356.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed Central  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  18. Teno, J. M. (2005). Measuring end-of-life care outcomes retrospectively. Journal of Palliative Medicine, 8(Supplement 1), s-42–s-49.

    Article  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  25. Steinhauser, K. E. (2005). Measuring end-of-life care outcomes prospectively. Journal of Palliative Medicine, 8(supplement 1), s-30–s-41.

    Article  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  32. Robinson, B. C. (1983). Validation of a Caregiver Strain Index. Journal of Gerontology, 38(3), 344–348.

    Article  CAS  PubMed  Google Scholar 

  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.

    Article  CAS  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  Google Scholar 

  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.

    Article  CAS  PubMed  Google Scholar 

  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.

    Article  CAS  PubMed  Google Scholar 

  41. Gold, M. R., Siegel, J. E., Russell, L. B., & Weinstein, M. (1996). Cost-effectiveness in health and medicine. New York: Oxford University Press.

    Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  CAS  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  47. Hoefman, R. J., Van Exel, N. J. A., & Brouwer, W. B. F. (2011). iVICQ. iMTA Valuation of Informal Care Questionnaire. iBMG/iMTA. http://www.bmg.eur.nl/english/imta/publications/questionnaires_manuals/ivicq/. Accessed 02/12 Version 1.1 (December 2013).

  48. Hoefman, R. J., van Exel, J., & Brouwer, W. (2013). How to include informal care in economic evaluations. Pharmacoeconomics, 31(12), 1105–1119.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed Central  PubMed  Google Scholar 

  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.

    Article  Google Scholar 

  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.

    Article  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  59. Streiner, D. L., & Norman, G. R. (2003). Health measurement scales: A practical guide to their development and use. Oxford: Oxford University Press.

    Google Scholar 

  60. Al-Janabi, H. (2009). Measurement and valuation of the caring experience for economic evaluation. Ph.D. Dissertation, University of Bristol.

  61. Hopkins, W. G. (2002). A new view of statistics: Effect magnitudes. http://www.sportsci.org/resource/stats/effectmag.html. Accessed 26-07-2010 2010.

  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.

    Google Scholar 

  63. Al-Janabi, H., Flynn, T. N., & Coast, J. (2011). QALYs and carers. Pharmacoeconomics, 29(12), 1015–1023.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed Central  PubMed  Google Scholar 

  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  Google Scholar 

  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.

    Article  CAS  PubMed  Google Scholar 

Download references

Acknowledgments

We would like to thank the caregivers who participated in our study. Moreover, we would like to thank Kate Swetenham, Service Director of Southern Adelaide Palliative Services and Aine Greene, Clinical Trials Manager, Southern Adelaide Palliative Services, for their assistance with survey administration and data collection.

Author information

Authors and Affiliations

  1. Institute for Health Policy and Management, Erasmus University Rotterdam, P.O. Box 1738, 3000 DR, Rotterdam, The Netherlands

    Renske Hoefman

  2. Health Economics Unit, University of Birmingham, Birmingham, UK

    Hareth Al-Janabi

  3. Discipline of Palliative and Supportive Services, Flinders University, Adelaide, Australia

    Nikki McCaffrey & David Currow

  4. Flinders Centre for Clinical Change and Health Care Research, Discipline of Palliative and Supportive Services, Flinders University, Adelaide, Australia

    Julie Ratcliffe

Authors
  1. Renske Hoefman
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Hareth Al-Janabi
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Nikki McCaffrey
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. David Currow
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Julie Ratcliffe
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Renske Hoefman.

Appendix

Appendix

See Figs. 1, 2, 3 and 4.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

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 24, 1255–1273 (2015). https://doi.org/10.1007/s11136-014-0848-8

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-014-0848-8

Keywords

Search

Navigation