Abstract
Background
There is a growing interest in incorporating informal care in cost-of-illness studies as a relevant part of the economic impact of some diseases.
Objective
The aim of this paper was to review the recent literature valuating the costs of informal care in a group of selected diseases from 2005 to 2015.
Methods
We carried out a systematic review on the economic impact of informal care, focusing on six selected diseases: arthritis or osteoarthritis, cancer, dementia, mental diseases, multiple sclerosis and stroke.
Results
We selected 91 cost-of-illness articles. The average weight attributed to the informal care cost over the total cost was highly relevant for dementia, stroke, mental diseases, cancer and multiple sclerosis. The most frequent valuation method applied was the opportunity cost method, followed by the proxy good method. The annual cost of informal care presented a high variability depending on the disease and geographic location. Distinguishing by type of illness, the disease with the highest annual value of informal caregiving was dementia, followed by mental illness and multiple sclerosis. The average hourly unit cost was €11.43 (2015 values), varying noticeably depending on the geographic location.
Conclusion
This paper identifies several aspects that should be enhanced to promote comparability between studies and countries, and it sends key messages for incorporating informal care costs to adequately measure the economic impact of diseases.
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References
World Health Organization. Health and ageing: a discussion paper. Geneva: World Health Organization, Department of Health Promotion, Non-Communicable Disease Prevention and Surveillance; 2001.
Commission European. Healthy ageing: keystone for a sustainable Europe. Brussels: European Commission; 2007.
Kendig H, Phillipson C. Building age-friendly communities: new approaches to challenging health and social inequalities. “If you could do one thing” Nine local actions to reduce health inequalities. London: The British Academy; 2014. p. 102–11.
Iezzoni LI. Policy concerns raised by the growing U.S. population aging with disability. Disabil Health J. 2014;7(1 Suppl):S64–8.
Midtsundstad T, Bogen H. Active Aging policies between individual needs and collective goods. A study of active aging policies and practices in Norway. Nordic J Work Life Stud. 2014;4(2):139–58.
Buffel T, McGarry P, Phillipson C, De Donder L, Dury S, De Witte N, et al. Developing age-friendly cities: case studies from Brussels and Manchester and implications for policy and practice. J Aging Soc Policy. 2014;26(1–2):52–72.
Commission European. The 2015 Ageing Report. Directorate-General for Economic and Financial Affairs: Underlying Assumptions and Projection Methodologies. European Commission; 2014.
Lafortune G, Balestat G. Trends in Severe Disability Among Elderly People: Assessing the Evidence in 12 OECD Countries and the Future Implications. Paris: OECD Publishing; 2007. OECD Health Working Papers, No. 26.
Pickard L, King D. Informal care supply and demand in Europe. In: Geerts. J, Willeme P, Mot E, editors. Long-term care use and supply in Europe: projections for Germany, the Netherlands, Spain and Poland. Brussels: European Network of Economic Policy Research Institutes (ENEPRI) Research Report 116; 2012. p. 114–23.
van den Berg B, Brouwer WB, Koopmanschap MA. Economic valuation of informal care. An overview of methods and applications. Eur J Health Econ. 2004;5(1):36–45.
Courtin E, Jemiai N, Mossialos E. Mapping support policies for informal carers across the European Union. Health Policy. 2014;118(1):84–94.
Triantafillou J, Naiditch M, Repkova K, Stiehr K, Carretero S, Emilsson T, et al. Informal care in the long-term care system. European Overview Paper. Athens: Health systems and long-term care for older people in Europe—INTERLINKS Project; 2010.
van Exel J, Bobinac A, Koopmanschap M, Brouwer W. The invisible hands made visible: recognizing the value of informal care in healthcare decision-making. Expert Rev Pharmacoecon Outcomes Res. 2008;8(6):557–61.
van Exel NJ, Brouwer WB, van den Berg B, Koopmanschap M, van den Bos GA. What really matters: an inquiry into the relative importance of dimensions of informal caregiver burden. Clin Rehabil. 2004;18(6):683–93.
Jimenez-Martin S, Prieto CV. The trade-off between formal and informal care in Spain. Eur J Health Econ. 2012;13(4):461–90.
Bauer JM, Sousa-Poza A. Impacts of Informal Caregiving on Caregiver Employment, Health, and Family. J Popul Ageing. 2015;8(3):113–45.
Schulz R, Beach SR. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA. 1999;282(23):2215–9.
Cohen CA, Colantonio A, Vernich L. Positive aspects of caregiving: rounding out the caregiver experience. Int J Geriatr Psychiatry. 2002;17:184–8.
Brouwer W, Van Exel J, Van Den Berg B, et al. Process utility from providing informal care: the benefit of caring. Health Policy. 2005;74:85–99.
Beach S, Schulz R, Yee J, Jackson S. Negative and positive health effects of caring for a disabled spouse: longitudinal findings from the caregiver health effects study. Psychol Aging. 2000;15:259–71.
Al-Janabi H, Coast J, Flynn T. What do people value when they provide unpaid care to an older person? A meta-ethnography with interview follow-up. Soc Sci Med. 2008;67:111–21.
Michael F. Drummond, Mark J. Sculpher, Karl Claxton, Greg L. Stoddart, and George W. Torrance. Methods for the economic evaluation of health care programmes. Fourth Edition. Oxford University Press. 2015.
Costa N, Ferlicoq L, Derumeaux-Burel H, Rapp T, Garnault V, Gillette-Guyonnet S, et al. Comparison of informal care time and costs in different age-related dementias: a review. Biomed Res Int. 2013;2013:852368.
Joo H, George MG, Fang J, Wang G. A literature review of indirect costs associated with stroke. J Stroke Cerebrovasc Dis. 2014;23(7):1753–63.
Pares-Badell O, Barbaglia G, Jerinic P, Gustavsson A, Salvador-Carulla L, Alonso J. Cost of disorders of the brain in Spain. PLoS One. 2014;9(8):e105471.
Phillipson L, Magee C, Jones SC. Why carers of people with dementia do not utilise out-of-home respite services. Health Soc Care Community. 2013;21(4):411–22.
Quentin W, Riedel-Heller SG, Luppa M, Rudolph A, Konig HH. Cost-of-illness studies of dementia: a systematic review focusing on stage dependency of costs. Acta Psychiatr Scand. 2010;121(4):243–59.
Russell LB. Completing costs: patients’ time. Med Care. 2009;47(7 Suppl 1):S89–93.
Schaller S, Mauskopf J, Kriza C, Wahlster P, Kolominsky-Rabas PL. The main cost drivers in dementia: a systematic review. Int J Geriatr Psychiatry. 2015;30(2):111–29.
Wineland AM, Stack BC Jr. Modern methods to predict costs for the treatment and management of head and neck cancer patients: examples of methods used in the current literature. Curr Opin Otolaryngol Head Neck Surg. 2008;16(2):113–6.
Heintz E, Gerber-Grote A, Ghabri S, Hamers FF, Rupel VP, Slabe-Erker R, et al. Is there a European view on health economic evaluations? Results from a synopsis of methodological guidelines used in the EUnetHTA partner countries. Pharmacoeconomics. 2016;34(1):59–76.
Jonsson B. Ten arguments for a societal perspective in the economic evaluation of medical innovations. Eur J Health Econ. 2009;10(4):357–9.
Krol M, Papenburg J, Tan SS, Brouwer W, Hakkaart L. A noticeable difference? Productivity costs related to paid and unpaid work in economic evaluations on expensive drugs. Eur J Health Econ. 2016;17(4):391–402.
Krol M, Papenburg J, van Exel J. Does including informal care in economic evaluations matter? A systematic review of inclusion and impact of informal care in cost-effectiveness studies. Pharmacoeconomics. 2015;33(2):123–35.
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.
Koopmanschap MA, van Ineveld BM. Towards a new approach for estimating indirect costs of disease. Soc Sci Med. 1992;34(9):1005–10.
Liljas B. How to calculate indirect costs in economic evaluations. Pharmacoeconomics. 1998;13(1 Pt 1):1–7.
Krol M, Brouwer W, Rutten F. Productivity costs in economic evaluations: past, present, future. Pharmacoeconomics. 2013;31(7):537–49.
Lensberg BR, Drummond MF, Danchenko N, Despiegel N, Francois C. Challenges in measuring and valuing productivity costs, and their relevance in mood disorders. Clinicoecon Outcomes Res. 2013;5:565–73.
Oliva J, Lobo F, Lopez-Bastida J, Zozaya N, Romay R. Indirect costs of cervical and breast cancers in Spain. Eur J Health Econ. 2005;6(4):309–13.
Lofland JH, Locklear JC, Frick KD. Different approaches to valuing the lost productivity of patients with migraine. Pharmacoeconomics. 2001;19(9):917–25.
Nicholson S, Pauly MV, Polsky D, Sharda C, Szrek H, Berger ML. Measuring the effects of work loss on productivity with team production. Health Econ. 2006;15(2):111–23.
Tilling C, Krol M, Tsuchiya A, Brazier J, Brouwer W. In or out? Income losses in health state valuations: a review. Value Health. 2010;13(2):298–305.
Nyman JA. Productivity costs revisited: toward a new US policy. Health Econ. 2012;21(12):1387–401.
Hoefman RJ, van Exel J, Brouwer W. How to include informal care in economic evaluations. Pharmacoeconomics. 2013;31(12):1105–19.
Koopmanschap MA, van Exel JN, van den Berg B, Brouwer WB. An overview of methods and applications to value informal care in economic evaluations of healthcare. Pharmacoeconomics. 2008;26(4):269–80.
van den Berg B, Spauwen P. Measurement of informal care: an empirical study into the valid measurement of time spent on informal caregiving. Health Econ. 2006;15(5):447–60.
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. 2005;14(2):169–83.
van den Berg B, Brouwer W, van Exel J, Koopmanschap M, van den Bos GA, Rutten F. Economic valuation of informal care: lessons from the application of the opportunity costs and proxy good methods. Soc Sci Med. 2006;62(4):835–45.
van den Berg B, Bleichrodt H, Eeckhoudt L. The economic value of informal care: a study of informal caregivers’ and patients’ willingness to pay and willingness to accept for informal care. Health Econ. 2005;14(4):363–76.
van den Berg B, Ferrer ICA. Monetary valuation of informal care: the well-being valuation method. Health Econ. 2007;16(11):1227–44.
de Meijer C, Brouwer W, Koopmanschap M, van den Berg B, van Exel J. The value of informal care–a further investigation of the feasibility of contingent valuation in informal caregivers. Health Econ. 2010;19(7):755–71.
van den Berg B, Al M, Brouwer W, van Exel J, Koopmanschap M. Economic valuation of informal care: the conjoint measurement method applied to informal caregiving. Soc Sci Med. 2005;61(6):1342–55.
van den Berg B, Al M, van Exel J, Koopmanschap M, Brouwer W. Economic valuation of informal care: conjoint analysis applied in a heterogeneous population of informal caregivers. Value Health. 2008;11(7):1041–50.
Mentzakis E, Ryan M, McNamee P. Using discrete choice experiments to value informal care tasks: exploring preference heterogeneity. Health Econ. 2011;20(8):930–44.
Garrido-Garcia S, Sanchez-Martinez FI, Abellan-Perpinan JM, van Exel J. Monetary valuation of informal care based on carers’ and noncarers’ preferences. Value Health. 2015;18(6):832–40.
Moher D, Liberati A, Tetzlaff J, Altman DG. The PRISMA Group. preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med. 2009;6(7):e1000097.
International Monetary Fund. World Economic Outlook Database [Internet] Washington: International Monetary Fund; 2015 [cited 2016 Jan Feb]. Available from: https://www.imf.org/external/pubs/ft/weo/2015/02/weodata/index.aspx.
Centers for Disease Control and Prevention. Division for Heart Disease and Stroke Prevention. Five-Part Webcast on Economic Evaluation. Glossary of terms. Available from: https://www.cdc.gov/dhdsp/programs/spha/economic_evaluation/docs/economic_evaluation_glossary.pdf.
Chari AV, Engberg J, Ray KN, Mehrotra A. The opportunity costs of informal elder-care in the United States: new estimates from the american time use survey. Health Serv Res. 2015;50(3):871–82.
Paraponaris A, Davin B, Verger P. Formal and informal care for disabled elderly living in the community: an appraisal of French care composition and costs. Eur J Health Econ. 2012;13(3):327–36.
Hollander MJ, Liu G, Chappell NL. Who cares and how much? The imputed economic contribution to the Canadian healthcare system of middle-aged and older unpaid caregivers providing care to the elderly. Healthc Q. 2009;12(2):42–9.
Oliva-Moreno J, Peña-Longobardo LM, Vilaplana-Prieto C. An estimation of the value of informal care provided to dependent people in Spain. Appl Health Econ Health Policy. 2015;13(2):223–31.
Carrera F, Pavolini E, Ranci C, Sabbatini A. Long-term care systems in comparative perspective: Care needs, informal and formal coverage, and social impacts in European countries. In: Pavolini E, Ranci C, editors. Reforms in long-term care policies in Europe: Investigating Institutional Change and Social Impacts. New York: Springer-Verlag New York; 2013. p. 23–52.
Costa-Font J, Zigante V. Long Term Care Coverage in Europe: A Case for ‘Implicit Insurance Partnerships’. London: The London School of Economics and Political Science; 2014. LSE Health Working Paper, No. 37.
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.
Trepel D. Informal cost of dementia care- a proxy-good valuation in Ireland. Econ Soc Rev (Irel). 2011;42(4):479–503.
Peña-Longobardo LM, Oliva-Moreno J. Economic valuation and determinants of informal care to people with Alzheimer’s disease. Eur J Health Econ. 2015;16(5):507–15.
Yabroff KR, Kim Y. Time costs associated with informal caregiving for cancer survivors. Cancer. 2009;115(18 Suppl):4362–73.
Albrecht D, Wollensak T, Ernst C, Becker C, Hautzinger M, Pfeiffer K. Costs of informal care in a sample of German geriatric stroke survivors. Eur J Ageing. 2016;13(1):49–61.
Hanly P, Ceilleachair AO, Skally M, O’Leary E, Staines A, Kapur K, et al. Time costs associated with informal care for colorectal cancer: an investigation of the impact of alternative valuation methods. Appl Health Econ Health Policy. 2013;11(3):193–203.
Hurd MD, Martorell P, Delavande A, Mullen KJ, Langa KM. Monetary costs of dementia in the United States. N Engl J Med. 2013;368(14):1326–34.
Gerves C, Chauvin P, Bellanger MM. Evaluation of full costs of care for patients with Alzheimer’s disease in France: the predominant role of informal care. Health Policy. 2014;116(1):114–22.
Wimo A, Reed CC, Dodel R, Belger M, Jones RW, Happich M, et al. The GERAS Study: a prospective observational study of costs and resource use in community dwellers with Alzheimer’s disease in three European countries–study design and baseline findings. J Alzheimers Dis. 2013;36(2):385–99.
Wolff N, Perlick DA, Kaczynski R, Calabrese J, Nierenberg A, Miklowitz DJ. Modeling costs and burden of informal caregiving for persons with bipolar disorder. J Ment Health Policy Econ. 2006;9(2):99–110.
Wubker A, Zwakhalen SM, Challis D, Suhonen R, Karlsson S, Zabalegui A, et al. Costs of care for people with dementia just before and after nursing home placement: primary data from eight European countries. Eur J Health Econ. 2015;16(7):689–707.
Bolin K, Lindgren B, Lundborg P. Informal and formal care among single-living elderly in Europe. Health Econ. 2008;17(3):393–409.
Chappell N, Blandford A. Informal and formal care: exploring the complementarity. Ageing Soc. 1991;11(03):299–317.
Denton M. The linkages between informal and formal care of the elderly. Can J Aging. 1997;16(01):30–50.
Greene VL. Substitution between formally and informally provided care for the impaired elderly in the community. Med Care. 1983:609–19.
Kehusmaa S, Autti-Ramo I, Helenius H, Rissanen P. Does informal care reduce public care expenditure on elderly care? Estimates based on Finland’s Age Study. BMC Health Serv Res. 2013;13:317.
Lee MJ, Kim YS. Zero-inflated endogenous count in censored model: effects of informal family care on formal health care. Health Econ. 2012;21(9):1119–33.
Litwak E. Helping the elderly: the complementary roles of informal networks & formal systems. New York: The Guilford Press; 1985.
Mentzakis E, McNamee P, Ryan M. Who cares and how much: exploring the determinants of co-residential informal care. Rev Econ Househ. 2009;7(3):283–303.
Moscovice I, Davidson G, McCaffrey D. Substitution of formal and informal care for the community-based elderly. Med Care. 1988;26(10):971–81.
Muramatsu N, Campbell RT. State expenditures on home and community based services and use of formal and informal personal assistance: a multilevel analysis. J Health Soc Behav. 2002;43(1):107–24.
Van Houtven CH, Norton EC. Informal care and health care use of older adults. J Health Econ. 2004;23(6):1159–80.
Arno PS, Levine C, Memmott MM. The economic value of informal caregiving. Health Aff (Millwood). 1999;18(2):182–8.
Saltman RB, Dubois HF, Chawla M. The impact of aging on long-term care in Europe and some potential policy responses. Int J Health Serv. 2006;36(4):719–46.
Fujisawa R, Colombo F. The Long-Term Care Workforce: overview and strategies to adapt supply to a growing demand. Paris: OECD Publishing; 2009. OECD Health Working Papers, No. 44.
Fernandez JL, Forder J, Trukeschitz B, Rokasova M, McDaid D. How can European states design efficient, equitable and sustainable funding systems for long-term care for older people? Copenhagen: WHO Regional Office for Europe; 2009. European Observatory on Health Systems and Policies. Policy Brief, No. 11.
Nolte H, Pitchforth E. What is the evidence on the economic impacts of integrated care? Copenhagen: WHO Regional Office for Europe; 2014. European Observatory on Health Systems and Policies. Policy Summary, No. 11.
Viitanen TK. Informal and Formal Care in Europe. Bonn: IZA, Institute for the Study of Labor; 2007. Discussion Paper Series, No. 2648.
Glanville J, Paisley S. Searching for evidence on resource use, costs, effects and cost-effectiveness. In: Shemilt I et al (editors) Evidence based economics. Oxford: Wiley-Blackwell;2010.
McKinlay RJ, Wilczynski NL, Haynes RB, the Hedges Team. Optimal search strategies for detecting cost and economic studies in EMBASE. BMC Health Serv Res 2006;6:67.
Coyle KB, Trochlil K, Iversen P. MEDLINE and EMBASE for health economic literature reviews [abstract]. Value Health. 2012;15(4):A162.
Sassi F, Archard L. McDaid d. Searching literature databases for health care economic evaluations: how systematic can we afford to be? Med Care. 2002;40(5):387–94.
Shemilt I, Mugford M, Vale L, Craig D. Searching NHS EED and HEED to inform development of economic commentary for Cochrane intervention reviews. Oxford: Cochrane Collaboration; 2011.
Hanly P, Ceilleachair AO, Skally M, O’Leary E, Kapur K, Fitzpatrick P, et al. How much does it cost to care for survivors of colorectal cancer? Caregiver’s time, travel and out-of-pocket costs. Support Care Cancer. 2013;21(9):2583–92.
Boyd KJ, Murray SA, Kendall M, Worth A, Frederick Benton T, Clausen H. Living with advanced heart failure: a prospective, community based study of patients and their carers. Eur J Heart Fail. 2004;6(5):585–91.
Hamalainen H, Smith R, Puukka P, Lind J, Kallio V, Kuttila K, et al. Social support and physical and psychological recovery one year after myocardial infarction or coronary artery bypass surgery. Scand J Public Health. 2000;28(1):62–70.
Haley WE, Allen JY, Grant JS, Clay OJ, Perkins M, Roth DL. Problems and benefits reported by stroke family caregivers: results from a prospective epidemiological study. Stroke. 2009;40(6):2129–33.
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This work was funded by the Spanish Ministry of Economy and Competitiveness under the “Programa Estatal de Investigación, Desarrollo e Innovación Orientada a los Retos de la Sociedad, Plan Estatal de Investigación Científica Técnica y de Innovación 2013–2016” programme. Research project references: ECO2013-48217-C2-1 and ECON2013-48217-C2-2-R (http://invesfeps.ulpgc.es/en). The funder had no influence over the conducting of this study or the drafting of this manuscript. No conflicts exist for Juan Oliva-Moreno, Marta Trapero-Bertran, Luz Maria Peña-Longobardo and Raúl del Pozo-Rubio. We are also grateful to the two anonymous reviewers and the editor for their helpful comments.
Author Contributions
JOM designed and managed the study. MTB carried out the systematic literature review. All authors (JOM, MTB, LPL and RPR) have reviewed, summarised and extracted information articles included in the review. JOM, MTB and LPL have contributed in writing the first draft of the manuscript. All the authors have provided input on multiple drafts of the manuscript and approval of the final version.
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Oliva-Moreno, J., Trapero-Bertran, M., Peña-Longobardo, L.M. et al. The Valuation of Informal Care in Cost-of-Illness Studies: A Systematic Review. PharmacoEconomics 35, 331–345 (2017). https://doi.org/10.1007/s40273-016-0468-y
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DOI: https://doi.org/10.1007/s40273-016-0468-y