Carer Preferences in Economic Evaluation and Healthcare Decision Making

Overview

Journal Patient

Specialty Health Services

Date 2013 Nov 6

PMID 24190630

Citations 13

Authors

Hareth Al-Janabi

Nikki McCaffrey

Julie Ratcliffe

Affiliations

Soon will be listed here.

Abstract

The preferences of informal carers are important to capture for healthcare decision making. This paper discusses how these preferences relate to the economic evaluation of health and care interventions. Three main issues are highlighted. First, there is a need to consider carer impact routinely in economic evaluations. Second, more debate is required around the ethical issues stemming from the inclusion of interdependent preferences in healthcare decision making. Third, there are a number of situations where carer and patient preferences may conflict and practical ways of representing and handling these conflicts would be useful.

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References

Prosser L, Grosse S, Wittenberg E . Health utility elicitation: is there still a role for direct methods?. Pharmacoeconomics. 2011; 30(2):83-6. DOI: 10.2165/11597720-000000000-00000. View

Hoefman R, van Exel J, Rose J, van de Wetering E, Brouwer W . A discrete choice experiment to obtain a tariff for valuing informal care situations measured with the CarerQol instrument. Med Decis Making. 2013; 34(1):84-96. DOI: 10.1177/0272989X13492013. View

Konig M, Wettstein A . Caring for relatives with dementia: willingness-to-pay for a reduction in caregiver's burden. Expert Rev Pharmacoecon Outcomes Res. 2009; 2(6):535-47. DOI: 10.1586/14737167.2.6.535. View

Al-Janabi H, Coast J, Flynn T . What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up. Soc Sci Med. 2008; 67(1):111-21. DOI: 10.1016/j.socscimed.2008.03.032. View

de Bekker-Grob E, Ryan M, Gerard K . Discrete choice experiments in health economics: a review of the literature. Health Econ. 2012; 21(2):145-72. DOI: 10.1002/hec.1697. View

Al-Janabi H, Flynn T, Coast J . Estimation of a preference-based carer experience scale. Med Decis Making. 2010; 31(3):458-68. DOI: 10.1177/0272989X10381280. View

Neubauer S, Holle R, Menn P, Grossfeld-Schmitz M, Graesel E . Measurement of informal care time in a study of patients with dementia. Int Psychogeriatr. 2008; 20(6):1160-76. DOI: 10.1017/S1041610208007564. View

Dahlberg L, Demack S, Bambra C . Age and gender of informal carers: a population-based study in the UK. Health Soc Care Community. 2007; 15(5):439-45. DOI: 10.1111/j.1365-2524.2007.00702.x. View

Wittenberg E, Prosser L . Disutility of illness for caregivers and families: a systematic review of the literature. Pharmacoeconomics. 2013; 31(6):489-500. PMC: 3674134. DOI: 10.1007/s40273-013-0040-y. View

10.

Gage H, Kaye J, Owen C, Trend P, Wade D . Evaluating rehabilitation using cost-consequences analysis: an example in Parkinson's disease. Clin Rehabil. 2006; 20(3):232-8. DOI: 10.1191/0269215506cr936oa. View

11.

Basu A, Dale W, Elstein A, Meltzer D . A time tradeoff method for eliciting partner's quality of life due to patient's health states in prostate cancer. Med Decis Making. 2010; 30(3):355-65. DOI: 10.1177/0272989X09349959. View

12.

Goodrich K, Kaambwa B, Al-Janabi H . The inclusion of informal care in applied economic evaluation: a review. Value Health. 2012; 15(6):975-81. DOI: 10.1016/j.jval.2012.05.009. View

13.

Tennstedt S, McKinlay J, Sullivan L . Informal care for frail elders: the role of secondary caregivers. Gerontologist. 1989; 29(5):677-83. DOI: 10.1093/geront/29.5.677. View

14.

Tang S, Liu T, Lai M, McCorkle R . Discrepancy in the preferences of place of death between terminally ill cancer patients and their primary family caregivers in Taiwan. Soc Sci Med. 2005; 61(7):1560-6. DOI: 10.1016/j.socscimed.2005.02.006. View

15.

Wiseman V . Caring: the neglected health outcome? or input?. Health Policy. 1996; 39(1):43-53. DOI: 10.1016/s0168-8510(96)00848-2. View

16.

Ryan M . Discrete choice experiments in health care. BMJ. 2004; 328(7436):360-1. PMC: 341374. DOI: 10.1136/bmj.328.7436.360. View

17.

Al-Janabi H, Flynn T, Coast J . QALYs and carers. Pharmacoeconomics. 2011; 29(12):1015-23. DOI: 10.2165/11593940-000000000-00000. View

18.

Tooth L, Russell A, Lucke J, Byrne G, Lee C, Wilson A . Impact of cognitive and physical impairment on carer burden and quality of life. Qual Life Res. 2007; 17(2):267-73. DOI: 10.1007/s11136-007-9300-7. View

19.

van den Berg B, Brouwer W, van Exel J, Koopmanschap M . Economic valuation of informal care: the contingent valuation method applied to informal caregiving. Health Econ. 2004; 14(2):169-83. DOI: 10.1002/hec.893. View

20.

Gomes B, Calanzani N, Gysels M, Hall S, Higginson I . Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliat Care. 2013; 12:7. PMC: 3623898. DOI: 10.1186/1472-684X-12-7. View