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Published in: PharmacoEconomics 12/2011

01-12-2011 | Current Opinion

QALYs and Carers

Authors: Dr Hareth Al-Janabi, Terry N. Flynn, Joanna Coast

Published in: PharmacoEconomics | Issue 12/2011

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Abstract

When going ‘beyond the patient’, to measure QALYs for unpaid carers, a number of additional methodological considerations and value judgements must be made. While there is no theoretical reason to restrict the measurement of QALYs to patients, decisions have to be made about which carers to consider, what instruments to use and how to aggregate and present QALYs for carers and patients. Current, albeit limited, practice in measuring QALY gains to carers in economic evaluation varies, suggesting that there may be inconsistency in judgements about whether interventions are deemed cost effective.
While conventional health-related quality-of-life tools can, in theory, be used to estimate QALYs, there are both theoretical and empirical concerns over the suitability of their use with carers. Measures that take a broader view of health or well-being may be more appropriate. Incorporating QALYs of carers in economic evaluations may have important distributional consequences and, therefore, greater normative discussion over the appropriateness of incorporating these impacts is required. In the longer term, more flexible forms of cost-per-QALY analysis may be required to take account of the broader impacts on carers and the weight these impacts should receive in decision making.
Footnotes
1
In all three cases, interventions may also affect the QOL of paid carers; however, these impacts would be assumed to be accounted for when costing the intervention (i.e. through requiring paid carers to work longer hours, or paying higher wages to compensate paid carers for unpleasant tasks). Impacts on unpaid carers’ QOL are more complex and do not appear to be closely related to time spent caring.[28]
 
2
This point and the remainder of the discussion in this section equally applies when considering the carer as the prime target and spillover effects on patients.
 
3
If the spillover effects on carers are negative, the implications are reversed.
 
Literature
2.
go back to reference Weinstein M, Stason W. Foundations of cost-effectiveness analysis for health and medical practices. N Engl J Med 1977; 296 (13): 716–21PubMedCrossRef Weinstein M, Stason W. Foundations of cost-effectiveness analysis for health and medical practices. N Engl J Med 1977; 296 (13): 716–21PubMedCrossRef
3.
go back to reference Brouwer W, Culyer A, van Exel J, et al. Welfarism vs extrawelfarism. J Health Econ 2008; 27: 325–38PubMedCrossRef Brouwer W, Culyer A, van Exel J, et al. Welfarism vs extrawelfarism. J Health Econ 2008; 27: 325–38PubMedCrossRef
4.
go back to reference Coast J, Flynn T, Sutton E, et al. Investigating Choice Experiments for Preferences of Older People (ICEPOP): evaluative spaces in health economics. J Health Serv Res Policy 2008; 13 Suppl.3: 31–7PubMedCrossRef Coast J, Flynn T, Sutton E, et al. Investigating Choice Experiments for Preferences of Older People (ICEPOP): evaluative spaces in health economics. J Health Serv Res Policy 2008; 13 Suppl.3: 31–7PubMedCrossRef
5.
go back to reference Brouwer W. Too important to ignore: informal caregivers and other significant others. Pharmacoeconomics 2006; 24 (1): 39–41PubMedCrossRef Brouwer W. Too important to ignore: informal caregivers and other significant others. Pharmacoeconomics 2006; 24 (1): 39–41PubMedCrossRef
6.
go back to reference Smith K, Wright K. Informal care and economic appraisal: a discussion of possible methodological approaches. Health Econ 1994; 3: 137–48PubMedCrossRef Smith K, Wright K. Informal care and economic appraisal: a discussion of possible methodological approaches. Health Econ 1994; 3: 137–48PubMedCrossRef
7.
go back to reference Davidson T, Levin L-A. Is the societal approach wide enough to include relatives? Appl Health Econ Health Policy 2010; 8 (1): 25–35PubMedCrossRef Davidson T, Levin L-A. Is the societal approach wide enough to include relatives? Appl Health Econ Health Policy 2010; 8 (1): 25–35PubMedCrossRef
8.
go back to reference Van Den Berg B, Brouwer W, Koopmanschap M. Economic valuation of informal care: an overview of methods and applications. Eur J Health Econ 2004; 5: 36–45PubMedCrossRef Van Den Berg B, Brouwer W, Koopmanschap M. Economic valuation of informal care: an overview of methods and applications. Eur J Health Econ 2004; 5: 36–45PubMedCrossRef
9.
go back to reference Koopmanschap M, Van Exel J, Van Den Berg B, et al. An overview of methods and applications to value informal care in economic evaluations. Pharmacoeconomics 2008; 26 (4): 269–80PubMedCrossRef Koopmanschap M, Van Exel J, Van Den Berg B, et al. An overview of methods and applications to value informal care in economic evaluations. Pharmacoeconomics 2008; 26 (4): 269–80PubMedCrossRef
10.
go back to reference Birch S, Donaldson C. Valuing the benefits and costs of health care programmes: where’s the ‘extra’ in extrawelfarism? Soc Sci Med 2003; 56: 1121–33PubMedCrossRef Birch S, Donaldson C. Valuing the benefits and costs of health care programmes: where’s the ‘extra’ in extrawelfarism? Soc Sci Med 2003; 56: 1121–33PubMedCrossRef
11.
go back to reference Ryan M, Shackley P. Assessing the benefits of health care: how far should we go? Qual Health Care 1995; 4 (3): 207–13PubMedCrossRef Ryan M, Shackley P. Assessing the benefits of health care: how far should we go? Qual Health Care 1995; 4 (3): 207–13PubMedCrossRef
12.
go back to reference Jacobsson F, Carstensen J, Borgquist L. Caring externalities in health economic evaluation: how are they related to severity of illness? Health Policy 2005; 73: 172–82PubMedCrossRef Jacobsson F, Carstensen J, Borgquist L. Caring externalities in health economic evaluation: how are they related to severity of illness? Health Policy 2005; 73: 172–82PubMedCrossRef
13.
go back to reference Culyer A. The nature of the commodity ‘health care’ and its efficient allocation. Oxf Econ Pap 1971; 23 (2): 189–211 Culyer A. The nature of the commodity ‘health care’ and its efficient allocation. Oxf Econ Pap 1971; 23 (2): 189–211
14.
go back to reference Labelle R, Hurley J. Implications of basing health-care resource allocations on cost-utility analysis in the presence of externalities. J Health Econ 1992; 11: 259–77PubMedCrossRef Labelle R, Hurley J. Implications of basing health-care resource allocations on cost-utility analysis in the presence of externalities. J Health Econ 1992; 11: 259–77PubMedCrossRef
15.
go back to reference Basu A, Meltzer D. Implications of spillover effects within the family for medical cost-effectiveness analysis. J Health Econ 2005; 24: 751–73PubMedCrossRef Basu A, Meltzer D. Implications of spillover effects within the family for medical cost-effectiveness analysis. J Health Econ 2005; 24: 751–73PubMedCrossRef
16.
go back to reference Gold M, Siegel J, Russell L, et al. Cost-effectiveness in health and medicine. New York: Oxford University Press, 1996 Gold M, Siegel J, Russell L, et al. Cost-effectiveness in health and medicine. New York: Oxford University Press, 1996
18.
go back to reference Busschbach J, Brouwer W, Van der Donk A, et al. An outline for a cost-effectiveness analysis of a drug for patients with Alzheimer’s disease. Pharmacoeconomics 1998; 13 (1 Pt 1): 21–34CrossRef Busschbach J, Brouwer W, Van der Donk A, et al. An outline for a cost-effectiveness analysis of a drug for patients with Alzheimer’s disease. Pharmacoeconomics 1998; 13 (1 Pt 1): 21–34CrossRef
19.
go back to reference Stone P, Chapman R, Sandberg E, et al. Measuring costs in cost-utility analyses: variations in the literature. Int J Technol Assess Health Care 2000; 16 (1): 111–24PubMedCrossRef Stone P, Chapman R, Sandberg E, et al. Measuring costs in cost-utility analyses: variations in the literature. Int J Technol Assess Health Care 2000; 16 (1): 111–24PubMedCrossRef
20.
21.
go back to reference Gallagher S, Mechanic D. Living with the mentally ill: effects on the health and functioning of other household members. Soc Sci Med 1996; 42 (12): 1691–701PubMedCrossRef Gallagher S, Mechanic D. Living with the mentally ill: effects on the health and functioning of other household members. Soc Sci Med 1996; 42 (12): 1691–701PubMedCrossRef
22.
23.
go back to reference Pinquart M, Sorensen S. Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging 2003; 18 (2): 250–67PubMedCrossRef Pinquart M, Sorensen S. Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging 2003; 18 (2): 250–67PubMedCrossRef
24.
go back to reference Bobinac A, van Exel NJ, Rutten FF, et al. Health effects in significant others: separating family and care-giving effects. Med Decis Making 2011; 31 (2): 292–8PubMedCrossRef Bobinac A, van Exel NJ, Rutten FF, et al. Health effects in significant others: separating family and care-giving effects. Med Decis Making 2011; 31 (2): 292–8PubMedCrossRef
25.
go back to reference Graff M, Adang E, Vernooij-Dassen M, et al. Community occupational therapy for older patients with dementia and their caregivers: cost effectiveness study. BMJ 2008; 336: 134–8PubMedCrossRef Graff M, Adang E, Vernooij-Dassen M, et al. Community occupational therapy for older patients with dementia and their caregivers: cost effectiveness study. BMJ 2008; 336: 134–8PubMedCrossRef
26.
go back to reference Loomes G, McKenzie L. The use of QALYs in health care decision making. Soc Sci Med 1989; 28 (4): 299–308PubMedCrossRef Loomes G, McKenzie L. The use of QALYs in health care decision making. Soc Sci Med 1989; 28 (4): 299–308PubMedCrossRef
27.
go back to reference Wade D, Gage H, Owen C, et al. Multidisciplinary rehabilitation for people with Parkinson’s disease: a randomised controlled study. J Neurol Neurosurg Psychiatry 2003; 74: 158–62PubMedCrossRef Wade D, Gage H, Owen C, et al. Multidisciplinary rehabilitation for people with Parkinson’s disease: a randomised controlled study. J Neurol Neurosurg Psychiatry 2003; 74: 158–62PubMedCrossRef
28.
go back to reference Scholte op Reimer W, de Haan R, Rijnders P, et al. The burden of caregiving in partners of long-term stroke survivors. Stroke 1998; 29: 1605–11PubMedCrossRef Scholte op Reimer W, de Haan R, Rijnders P, et al. The burden of caregiving in partners of long-term stroke survivors. Stroke 1998; 29: 1605–11PubMedCrossRef
29.
go back to reference Dixon S, Walker M, Salek S. Incorporating carer effects into economic evaluation. Pharmacoeconomics 2006; 24 (1): 43–53PubMedCrossRef Dixon S, Walker M, Salek S. Incorporating carer effects into economic evaluation. Pharmacoeconomics 2006; 24 (1): 43–53PubMedCrossRef
30.
go back to reference Pinquart M, Sorensen S. Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis. J Gerontol B Psychol Sci Soc Sci 2003; 58 (2): 112–28CrossRef Pinquart M, Sorensen S. Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis. J Gerontol B Psychol Sci Soc Sci 2003; 58 (2): 112–28CrossRef
31.
go back to reference Bilcke J, Van Damme P, Beutels P. Cost-effectiveness of rotavirus vaccination: exploring caregiver(s) and ‘no medical care’ disease impact in Belgium. Med Decis Making 2009; 29 (1): 33–50PubMedCrossRef Bilcke J, Van Damme P, Beutels P. Cost-effectiveness of rotavirus vaccination: exploring caregiver(s) and ‘no medical care’ disease impact in Belgium. Med Decis Making 2009; 29 (1): 33–50PubMedCrossRef
32.
go back to reference Gooberman-Hill R, Ebrahim S. Informal care at times of change in health and mobility: a qualitative study. Age Ageing 2006; 35 (3): 261–6PubMedCrossRef Gooberman-Hill R, Ebrahim S. Informal care at times of change in health and mobility: a qualitative study. Age Ageing 2006; 35 (3): 261–6PubMedCrossRef
33.
go back to reference Neubauer S, Holle R, Menn P, et al. Measurement of informal care time in a study of patients with dementia. Int Psychogeriatr 2008; 20: 1160–76PubMedCrossRef Neubauer S, Holle R, Menn P, et al. Measurement of informal care time in a study of patients with dementia. Int Psychogeriatr 2008; 20: 1160–76PubMedCrossRef
34.
go back to reference Neumann P, Kuntz K, Leon J, et al. Health utilities in Alzheimer’s disease: a cross-sectional study of patients and caregivers. Med Care 1999; 37 (1): 27–32PubMedCrossRef Neumann P, Kuntz K, Leon J, et al. Health utilities in Alzheimer’s disease: a cross-sectional study of patients and caregivers. Med Care 1999; 37 (1): 27–32PubMedCrossRef
35.
go back to reference Patel A, Knapp M, Evans A, et al. Training care givers of stroke patients: economic evaluation. BMJ 2004; 328: 1102–7PubMedCrossRef Patel A, Knapp M, Evans A, et al. Training care givers of stroke patients: economic evaluation. BMJ 2004; 328: 1102–7PubMedCrossRef
36.
go back to reference Brazier J, Ratcliffe J, Salomon J, et al. Measuring and valuing health benefits for economic evaluation. Oxford: Oxford University Press, 2007 Brazier J, Ratcliffe J, Salomon J, et al. Measuring and valuing health benefits for economic evaluation. Oxford: Oxford University Press, 2007
37.
go back to reference Sen A. Personal utilities and public judgements: or what is wrong with welfare economics? Econ J 1979; 89: 537–58CrossRef Sen A. Personal utilities and public judgements: or what is wrong with welfare economics? Econ J 1979; 89: 537–58CrossRef
38.
go back to reference Sen A. Commodities and capabilities. New Delhi: Oxford University Press, 1987 Sen A. Commodities and capabilities. New Delhi: Oxford University Press, 1987
39.
go back to reference Al-Janabi H, Coast J, Flynn T. What do people value when they provide unpaid care to an older person? A metaethnography with interview follow-up. Soc Sci Med 2008; 67 (1): 111–21 Al-Janabi H, Coast J, Flynn T. What do people value when they provide unpaid care to an older person? A metaethnography with interview follow-up. Soc Sci Med 2008; 67 (1): 111–21
40.
go back to reference Boorse C. Health as a theoretical concept. Philos Sci 1977; 44 (4): 542–73CrossRef Boorse C. Health as a theoretical concept. Philos Sci 1977; 44 (4): 542–73CrossRef
42.
go back to reference Lawton P, Kleban M, Moss M, et al. Measuring caregiver appraisal. J Gerontol B Psychol Soc Sci 1989; 44 (3): 61–71 Lawton P, Kleban M, Moss M, et al. Measuring caregiver appraisal. J Gerontol B Psychol Soc Sci 1989; 44 (3): 61–71
43.
go back to reference Scholte op Reimer W, de Haan R, Pijnenborg J, et al. Assessment of burden in partners of stroke patients with the Sense of Competence Questionnaire. Stroke 1998; 29: 373–9PubMedCrossRef Scholte op Reimer W, de Haan R, Pijnenborg J, et al. Assessment of burden in partners of stroke patients with the Sense of Competence Questionnaire. Stroke 1998; 29: 373–9PubMedCrossRef
44.
go back to reference Deeken J, Taylor K, Mangan P, et al. Care for the caregiver: a review of self-report instruments developed to measure the burden, needs and quality of life of informal caregivers. J Pain Aging 2003; 26 (4): 922–53 Deeken J, Taylor K, Mangan P, et al. Care for the caregiver: a review of self-report instruments developed to measure the burden, needs and quality of life of informal caregivers. J Pain Aging 2003; 26 (4): 922–53
45.
go back to reference Brouwer W, van Exel J, van Gorp B, et al. The CarerQol instrument: a new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Qual Life Res 2006; 15: 1005–21PubMedCrossRef Brouwer W, van Exel J, van Gorp B, et al. The CarerQol instrument: a new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Qual Life Res 2006; 15: 1005–21PubMedCrossRef
46.
go back to reference Drummond M, Mohide E, Tew M, et al. Economic evaluation of a support program for caregivers of demented elderly. Int J Technol Assess Health Care 1991; 7 (2): 209–19PubMedCrossRef Drummond M, Mohide E, Tew M, et al. Economic evaluation of a support program for caregivers of demented elderly. Int J Technol Assess Health Care 1991; 7 (2): 209–19PubMedCrossRef
47.
go back to reference Al-Janabi H, Flynn T, Coast J. Estimation of a preferencebased carer experience scale. Med Decis Making 2011; 31 (3): 458–68PubMedCrossRef Al-Janabi H, Flynn T, Coast J. Estimation of a preferencebased carer experience scale. Med Decis Making 2011; 31 (3): 458–68PubMedCrossRef
50.
go back to reference Charlesworth G, Shepstone L, Wilson E, et al. Does befriending by trained lay workers improve psychological well-being and quality of life for carers of people with dementia, and at what cost? A randomised controlled trial. Health Technol Assess 2008; 12 (4) [online]. Available from URL: http://www.hta.ac.uk/fullmono/mon1204.pdf [Accessed 2011 Mar 30] Charlesworth G, Shepstone L, Wilson E, et al. Does befriending by trained lay workers improve psychological well-being and quality of life for carers of people with dementia, and at what cost? A randomised controlled trial. Health Technol Assess 2008; 12 (4) [online]. Available from URL: http://​www.​hta.​ac.​uk/​fullmono/​mon1204.​pdf [Accessed 2011 Mar 30]
51.
go back to reference Bell C, Araki S, Neumann P. The association between caregiver burden and caregiver health-related quality of life in Alzheimer’s disease. Alzheimer Dis Assoc Disord 2001; 15 (3): 129–36PubMedCrossRef Bell C, Araki S, Neumann P. The association between caregiver burden and caregiver health-related quality of life in Alzheimer’s disease. Alzheimer Dis Assoc Disord 2001; 15 (3): 129–36PubMedCrossRef
52.
go back to reference Brazier J, Roberts J, Deverill M. The estimation of a preference-based measure of health from the SF-36. J Health Econ 2002; 21: 271–92PubMedCrossRef Brazier J, Roberts J, Deverill M. The estimation of a preference-based measure of health from the SF-36. J Health Econ 2002; 21: 271–92PubMedCrossRef
53.
go back to reference Hawthorne G, Richardson J, Osborne R. The assessment of quality of life (AQoL) instrument: a psychometric measure of health-related quality of life. Qual Life Res 1999; 8: 209–24PubMedCrossRef Hawthorne G, Richardson J, Osborne R. The assessment of quality of life (AQoL) instrument: a psychometric measure of health-related quality of life. Qual Life Res 1999; 8: 209–24PubMedCrossRef
54.
go back to reference Bobinac A, van Exel J, Rutten F, et al. Caring for and caring about: disentangling the caregiving effect and the family effect. J Health Econ 2010; 29 (4): 549–56PubMedCrossRef Bobinac A, van Exel J, Rutten F, et al. Caring for and caring about: disentangling the caregiving effect and the family effect. J Health Econ 2010; 29 (4): 549–56PubMedCrossRef
55.
go back to reference Coast J, Flynn T, Natarajan L, et al. Valuing the ICECAP capability index for older people. Soc Sci Med 2008; 67 (5): 874–82PubMedCrossRef Coast J, Flynn T, Natarajan L, et al. Valuing the ICECAP capability index for older people. Soc Sci Med 2008; 67 (5): 874–82PubMedCrossRef
56.
go back to reference Wilson E, Thalanany M, Shepstone L, et al. Befriending carers of people with dementia: a cost utility analysis. Int J Geriatr Psychiatr 2009; 24 (6): 610–23CrossRef Wilson E, Thalanany M, Shepstone L, et al. Befriending carers of people with dementia: a cost utility analysis. Int J Geriatr Psychiatr 2009; 24 (6): 610–23CrossRef
57.
go back to reference Williams A. Intergenerational equity: an exploration of the ‘fair-innings’ argument. Health Econ 1997; 6: 117–32PubMedCrossRef Williams A. Intergenerational equity: an exploration of the ‘fair-innings’ argument. Health Econ 1997; 6: 117–32PubMedCrossRef
58.
go back to reference Dolan P, Shaw R, Tsuchiya A, et al. QALY maximisation and people’s preferences: a methodological review of the literature. Health Econ 2005; 14: 197–208PubMedCrossRef Dolan P, Shaw R, Tsuchiya A, et al. QALY maximisation and people’s preferences: a methodological review of the literature. Health Econ 2005; 14: 197–208PubMedCrossRef
Metadata
Title
QALYs and Carers
Authors
Dr Hareth Al-Janabi
Terry N. Flynn
Joanna Coast
Publication date
01-12-2011
Publisher
Springer International Publishing
Published in
PharmacoEconomics / Issue 12/2011
Print ISSN: 1170-7690
Electronic ISSN: 1179-2027
DOI
https://doi.org/10.2165/11593940-000000000-00000

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