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Cost–Utility Analyses of Interventions for Informal Carers: A Systematic and Critical Review



Demographic and epidemiological changes place an increasing reliance on informal carers. Some support programmes exist, but funding is often limited. There is a need for economic evaluation of interventions for carers to assist policymakers in prioritizing carer support.


Our aim was to systematically review and critically appraise cost–utility analyses of interventions for informal carers, in order to assess the methods employed and the quality of the reporting.


A systematic review of databases was conducted using MEDLINE, Embase, PsycINFO, and EconLit of items published between 1950 and February 2019. Published studies were selected if they involved a cost–utility analysis of an intervention mainly or jointly targeting informal carers. The reporting quality of economic analyses was evaluated using the Consolidated Health Economic Evaluation Reporting Standards (CHEERS) statement.


An initial set of 1364 potentially relevant studies was identified. The titles and the abstracts were then screened, resulting in the identification of 62 full-text articles that warranted further assessment of their eligibility. Of these, 20 economic evaluations of informal carer interventions met the inclusion criteria. The main geographical area was the UK (n = 11). These studies were conducted in mental and/or behavioural (n = 15), cardiovascular (n = 3) or cancer (n = 2) clinical fields. These cost–utility analyses were based on randomized clinical trials (n = 16) and on observational studies (n = 4), of which only one presented a Markov model-based economic evaluation. Four of the six psychological interventions were deemed to be cost effective versus two of the four education/support interventions, and four of the nine training/support interventions. Two articles achieved a CHEERS score of 100% and nine of the economic evaluations achieved a score of 85% in terms of the CHEERS criteria for high-quality economic studies.


Our critical review highlights the lack of cost–utility analyses of interventions to support informal carers. However, it also shows the relative prominence of good reporting practices in these analyses that other studies might be able to build on.

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Fig. 1


  1. 1.

  2. 2.

  3. 3.


  1. 1.

    Mello JA, Macq J, Van Durme T, Cès S, Spruytte N, Van Audenhove C, et al. The determinants of informal caregivers’ burden in the care of frail older persons: a dynamic and role-related perspective. Aging Ment Health. 2017;21:838–43.

    PubMed  Google Scholar 

  2. 2.

    Paraponaris A, Davin B. Economics of the iceberg: informal care provided to French elderly with dementia. Value Health. 2015;18:368–75.

    PubMed  Google Scholar 

  3. 3.

    Goodrich K, Kaambwa B, Al-Janabi H. The inclusion of informal care in applied economic evaluation: A review. Value Health. 2012;15:975–81.

    PubMed  Google Scholar 

  4. 4.

    Colombo F, Ana L-N, Mercier J, Tjadens F. Help wanted? : providing and paying for long-term care [Internet]. OECD; 2011.

  5. 5.

    Rahola A. Synthèse du débat national sur la dépendance Axel RAHOLA Rapporteur du Comité interministériel de la dépendance [Internet]; 2011.

  6. 6.

    Hoare S, Kelly MP, Barclay S. Home care and end-of-life hospital admissions: a retrospective interview study in English primary and secondary care. Br J Gen Pract. 2019;69:e561–9.

    PubMed  PubMed Central  Google Scholar 

  7. 7.

    Posnett J, Jan S. Indirect cost in economic evaluation: the opportunity cost of unpaid inputs. Health Econ. 1996;5:13–23.

    PubMed  CAS  Google Scholar 

  8. 8.

    Brouwer WB, van Exel NJ, Koopmanschap MA, Rutten FF. The valuation of informal care in economic appraisal: a consideration of individual choice and societal costs of time. Int J Technol Assess Health Care. 1999;15:147–60.

    PubMed  CAS  Google Scholar 

  9. 9.

    Oliva-Moreno J, Trapero-Bertran M, Peña-Longobardo LM, del Pozo-Rubio R. The valuation of informal care in cost-of-illness studies: a systematic review. pharmacoeconomics. 2017;35:331–45.

    Google Scholar 

  10. 10.

    Hoefman RJ, van Exel J, Brouwer WBF. The monetary value of informal care: obtaining pure time valuations using a discrete choice experiment. Pharmacoeconomics. 2019;37:531–40.

    PubMed  Google Scholar 

  11. 11.

    Gheorghe M, Hoefman RJ, Versteegh MM, van Exel J. Estimating informal caregiving time from patient EQ-5D data: the informal CARE effect (iCARE) tool. Pharmacoeconomics. 2019;37:93–103.

    PubMed  Google Scholar 

  12. 12.

    Landfeldt E, Zethraeus N, Lindgren P. Standardized questionnaire for the measurement, valuation, and estimation of costs of informal care based on the opportunity cost and proxy good method. Appl Health Econ Health Policy. 2019;17:15–24.

    PubMed  Google Scholar 

  13. 13.

    Thomas S, Dalton J, Harden M, Eastwood A, Parker G. Updated meta-review of evidence on support for carers. Health Serv Deliv Res. 2017;5:1–132.

    Google Scholar 

  14. 14.

    Selwood A, Johnston K, Katona C, Lyketsos C, Livingston G. Systematic review of the effect of psychological interventions on family caregivers of people with dementia. J Affect Disord. 2007;101:75–89.

    PubMed  CAS  Google Scholar 

  15. 15.

    Charlesworth GM. Reviewing psychosocial interventions for family carers of people with dementia. Aging Ment Health. 2001;5:104–6.

    PubMed  CAS  Google Scholar 

  16. 16.

    Robinson L, Iliffe S, Brayne C, Goodman C, Rait G, Manthorpe J, et al. Primary care and dementia: 2. Long-term care at home: psychosocial interventions, information provision, carer support and case management. Int J Geriatr Psychiatry. 2009;25:657–64.

    Google Scholar 

  17. 17.

    Cross AJ, Garip G, Sheffield D. The psychosocial impact of caregiving in dementia and quality of life: a systematic review and meta-synthesis of qualitative research. Psychol Health. 2018;33:1321–42.

    PubMed  Google Scholar 

  18. 18.

    Stall NM, Kim SJ, Hardacre KA, Shah PS, Straus SE, Bronskill SE, et al. Association of informal caregiver distress with health outcomes of community-dwelling dementia care recipients: a systematic review. J Am Geriatr Soc. 2018;67:jgs.15690.

    Google Scholar 

  19. 19.

    Akarsu NE, Prince M, Lawrence V, Das-Munshi J. Depression in carers of people with dementia from a minority ethnic background: systematic review and meta-analysis of randomised-controlled trials of psychosocial interventions. Int J Geriatr Psychiatry. 2019;34:790–806.

    PubMed  Google Scholar 

  20. 20.

    Baruch E, Pistrang N, Barker C. Psychological interventions for caregivers of people with bipolar disorder: a systematic review and meta-analysis. J Affect Disord. 2018;236:187–98.

    PubMed  Google Scholar 

  21. 21.

    Hopwood J, Walker N, McDonagh L, Rait G, Walters K, Iliffe S, et al. Internet-based interventions aimed at supporting family caregivers of people with dementia: systematic review. J Med Internet Res. 2018;20:e216.

    PubMed  PubMed Central  Google Scholar 

  22. 22.

    Clarkson P, Davies L, Jasper R, Loynes N, Challis D. A systematic review of the economic evidence for home support interventions in dementia. Value Health. 2017;20:1198–209.

    PubMed  Google Scholar 

  23. 23.

    Jones C, Edwards RT, Hounsome B. A systematic review of the cost-effectiveness of interventions for supporting informal caregivers of people with dementia residing in the community. Int Psychogeriatr. 2012;24:6–18.

    PubMed  Google Scholar 

  24. 24.

    Van Den Noortgate N, Verhaeghe S, Annemans L, Putman K, Verdonck C, Vandepitte S. Effectiveness of respite care in supporting informal caregivers of persons with dementia: a systematic review. Int J Geriatr Psychiatry. 2016;31:1277–88.

    Google Scholar 

  25. 25.

    Vandepitte S, Van Den Noortgate N, Putman K, Verhaeghe S, Faes K, Annemans L. Effectiveness of supporting informal caregivers of people with dementia: a systematic review of randomized and non-randomized controlled trials. J Alzheimer’s Dis. 2016;52:929–65.

    Google Scholar 

  26. 26.

    Lopez Hartmann M, Wens J, Verhoeven V, Remmen R. The effect of caregiver support interventions for informal caregivers of community-dwelling frail elderly: a systematic review. Int J Integr Care. 2012;12:e133.

    PubMed  PubMed Central  Google Scholar 

  27. 27.

    Candy B, Jones L, Drake R, Leurent B, King M. Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database Syst Rev. 2011.

    Article  PubMed  Google Scholar 

  28. 28.

    Mcnally S, Ben-shlomoœ Y, Newman S, Ben-Shlomo Y, Newman S, Ben-shlomoœ Y, et al. The effects of respite care on informal carers’ well-being: a systematic review. Disabil Rehabil. 1999;21:1–14.

    PubMed  CAS  Google Scholar 

  29. 29.

    Mason A, Weatherly H, Spilsbury K, Arksey H, Golder S, Adamson J, et al. A systematic review of the effectiveness and cost-effectiveness of different models of community-based respite care for frail older people and their carers. Health Technol. Assess. 2007;11:1–157.

    PubMed  CAS  Google Scholar 

  30. 30.

    Shaw C, McNamara R, Abrams K, Cannings-John R, Hood K, Longo M, et al. Systematic review of respite care in the frail elderly. Health Technol Assess (Rockv). 2009;13:1–224, iii.

    CAS  Google Scholar 

  31. 31.

    Bee PE, Barnes P, Luker KA. A systematic review of informal caregivers’ needs in providing home-based end-of-life care to people with cancer. J Clin Nurs. 2009;18:1379–93.

    PubMed  Google Scholar 

  32. 32.

    Maayan N, Soares-Weiser K, Lee H. Respite care for people with dementia and their carers. Cochrane Database Syst Rev. 2014.

    Article  PubMed  Google Scholar 

  33. 33.

    Sorensen S, Pinquart M, Duberstein P. How effective are interventions with caregivers? An updated meta-analysis. Gerontologist. 2002;42:356–72.

    PubMed  Google Scholar 

  34. 34.

    Rigby H, Gubitz G, Phillips S. A systematic review of caregiver burden following stroke. Int J Stroke. 2009;4:285–92.

    PubMed  CAS  Google Scholar 

  35. 35.

    Wittenberg E, James LP, Prosser LA. Spillover effects on caregivers’ and family members’ utility: a systematic review of the literature. Pharmacoeconomics. 2019;37:475–99.

    PubMed  Google Scholar 

  36. 36.

    Lin P-J, D’Cruz B, Leech AA, Neumann PJ, Sanon Aigbogun M, Oberdhan D, et al. Family and caregiver spillover effects in cost-utility analyses of alzheimer’s disease interventions. Pharmacoeconomics. 2019;37:597–608.

    PubMed  Google Scholar 

  37. 37.

    Grosse SD, Pike J, Soelaeman R, Tilford JM. Quantifying family spillover effects in economic evaluations: measurement and valuation of informal care time. Pharmacoeconomics. 2019;37:461–73.

    PubMed  PubMed Central  Google Scholar 

  38. 38.

    Moher D, Shamseer L, Clarke M, Ghersi D, Liberati A, Petticrew M, et al. Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015 statement. Syst Rev. 2015;4:1.

    PubMed  PubMed Central  Google Scholar 

  39. 39.

    McCabe C, Claxton K, Culyer AJ. The NICE cost-effectiveness threshold. Pharmacoeconomics. 2008;26:733–44.

    PubMed  Google Scholar 

  40. 40.

    Griffiths E, Vadlamudi N. Cadth’s $50,000 Cost-effectiveness threshold: fact or fiction? Value Health. 2016;19:A488–9.

    Google Scholar 

  41. 41.

    Polinder S, Toet H, Panneman M, van Beeck E. Methodological approaches for cost-effectiveness and cost-utility analysis of injury prevention measures. World Heal Organ. 2011.

  42. 42.

    Husereau D, Drummond M, Petrou S, Carswell C, Moher D, Greenberg D, et al. Consolidated health economic evaluation reporting standards (CHEERS)—explanation and elaboration: a report of the ISPOR health economic evaluation publication guidelines good reporting practices task force. Value Health. 2013;16:231–50.

    PubMed  Google Scholar 

  43. 43.

    Charlesworth G, Shepstone L, Wilson E, Thalanany M, Mugford M, Poland F. 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 (Rockv). 2008;12:4–7.

    Google Scholar 

  44. 44.

    Chatterton ML, Chambers S, Occhipinti S, Girgis A, Dunn J, Carter R, et al. Economic evaluation of a psychological intervention for high distress cancer patients and carers: costs and quality-adjusted life years. Psychooncology. 2016;25:857–64.

    PubMed  Google Scholar 

  45. 45.

    Knapp M, King D, Romeo R, Schehl B, Barber J, Griffin M, et al. Cost effectiveness of a manual based coping strategy programme in promoting the mental health of family carers of people with dementia (the START (STrAtegies for RelaTives) study): a pragmatic randomised controlled trial. BMJ. 2013;347:f6342.

    PubMed  PubMed Central  Google Scholar 

  46. 46.

    Livingston G, Barber J, Rapaport P, Knapp M, Griffin M, Romeo R, et al. START (STrAtegies for RelaTives) study: a pragmatic randomised controlled trial to determine the clinical effectiveness and cost-effectiveness of a manual-based coping strategy programme in promoting the mental health of carers of people with dementia. Health Technol Assess. 2014;18:1–242.

    PubMed  PubMed Central  Google Scholar 

  47. 47.

    Richards-Jones S, Mihalopoulos C, Heckel L, Gunn KM, Tan M, Livingston PM. An economic evaluation of a telephone outcall intervention for informal carers of cancer patients in Australia: an assessment of costs and quality-adjusted-life-years. Psychooncology. 2019;28:525–32.

    PubMed  Google Scholar 

  48. 48.

    Wilson E, Thalanany M, Shepstone L, Charlesworth G, Poland F, Harvey I, et al. Befriending carers of people with dementia: a cost utility analysis. Int J Geriatr Psychiatry. 2009;24:610–23.

    PubMed  Google Scholar 

  49. 49.

    Drummond MF, Mohide EA, Tew M, Streiner DL, Pringle DM, Gilbert JR, et al. Economic evaluation of a support program for caregivers of demented elderly. Int J Technol Assess Health Care. 1991;7:209–19.

    PubMed  CAS  Google Scholar 

  50. 50.

    Forster A, Dickerson J, Young J, Patel A, Kalra L, Nixon J, et al. A cluster randomised controlled trial and economic evaluation of a structured training programme for caregivers of inpatients after stroke: the TRACS trial. Health Technol Assess. 2013;17:1–216.

    PubMed  PubMed Central  CAS  Google Scholar 

  51. 51.

    Forster A, Young J, Chapman K, Nixon J, Patel A, Holloway I, et al. Cluster randomized controlled trial: clinical and cost-effectiveness of a system of longer-term stroke care. Stroke. 2015;46:2212–9.

    PubMed  PubMed Central  Google Scholar 

  52. 52.

    Martikainen J, Valtonen H, Pirttilä T. Potential cost-effectiveness of a family-based program in mild Alzheimer’s disease patients. Eur J Health Econ. 2004;5:136–42.

    PubMed  Google Scholar 

  53. 53.

    Orgeta V, Leung P, Yates L, Kang S, Hoare Z, Henderson C, et al. Individual cognitive stimulation therapy for dementia: a clinical effectiveness and cost-effectiveness pragmatic, multicentre, randomised controlled trial. Health Technol Assess (Rockv). 2015;19:1–108.

    Google Scholar 

  54. 54.

    Orrell M, Hoe J, Charlesworth G, Russell I, Challis D, Moniz-Cook E, et al. Support at Home: Interventions to Enhance Life in Dementia (SHIELD)—evidence, development and evaluation of complex interventions [Internet]. Support Home Interv. to Enhanc. Life Dement—evidence, Dev. Eval. complex Interv. NIHR Journals Library; 2017.

  55. 55.

    Patel A, Knapp M, Evans A, Perez I, Kalra L. Training care givers of stroke patients: economic evaluation. BMJ. 2004;328:1102.

    PubMed  PubMed Central  Google Scholar 

  56. 56.

    Sturkenboom IHWM, Hendriks JCM, Graff MJL, Adang EMM, Munneke M, Nijhuis-van der Sanden MWG, et al. Economic evaluation of occupational therapy in Parkinson’s disease: A randomized controlled trial. Mov Disord. 2015;30:1059–67.

    PubMed  Google Scholar 

  57. 57.

    Woods R, Bruce E, Edwards R, Elvish R, Hoare Z, Hounsome B, et al. REMCARE: reminiscence groups for people with dementia and their family caregivers—effectiveness and cost-effectiveness pragmatic multicentre randomised trial. Health Technol Assess (Rockv). 2012;16:v–xv, 1–116.

    Google Scholar 

  58. 58.

    Woods RT, Orrell M, Bruce E, Edwards RT, Hoare Z, Hounsome B, et al. REMCARE: pragmatic multi-centre randomised trial of reminiscence groups for people with dementia and their family carers: effectiveness and economic analysis. PLoS One. 2016;11:e0152843.

    PubMed  PubMed Central  Google Scholar 

  59. 59.

    Dahlrup B, Nordell E, Steen Carlsson K, Elmståhl S. Health economic analysis on a psychosocial intervention for family caregivers of persons with dementia. Dement Geriatr Cogn Disord. 2014;37:181–95.

    PubMed  Google Scholar 

  60. 60.

    Joling KJ, Bosmans JE, van Marwijk HW, van der Horst HE, Scheltens P, Vroomen JL, et al. The cost-effectiveness of a family meetings intervention to prevent depression and anxiety in family caregivers of patients with dementia: a randomized trial. Trials. 2013;14:305.

    PubMed  PubMed Central  Google Scholar 

  61. 61.

    Søgaard R, Sørensen J, Waldorff FB, Eckermann A, Buss DV, Phung TKT, et al. Early psychosocial intervention in Alzheimer’s disease: cost utility evaluation alongside the Danish Alzheimer’s Intervention Study (DAISY). BMJ Open. 2014;4:4105.

    Google Scholar 

  62. 62.

    Vroomen MJ, Bosmans JE, Eekhout I, Joling KJ, van Mierlo LD, Meiland FJM, et al. The cost-effectiveness of two forms of case management compared to a control group for persons with dementia and their informal caregivers from a societal perspective. PLoS One. 2016;11:e0160908.

    Google Scholar 

  63. 63.

    Neumann PJ, Hermann RC, Kuntz KM, Araki SS, Duff SB, Leon J, et al. Cost-effectiveness of donepezil in the treatment of mild or moderate Alzheimer’s disease. Neurology. 1999;52:1138–45.

    PubMed  CAS  Google Scholar 

  64. 64.

    EUnetHTA Joint Action 2, Work Package 7, Subgroup 3, Heintz E, Gerber-Grote A, Ghabri S, Hamers FF, Rupel VP, 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;34:59–76.

    Google Scholar 

  65. 65.

    Anderson R. Systematic reviews of economic evaluations: utility or futility? Health Econ. 2010;19:350–64.

    PubMed  Google Scholar 

  66. 66.

    Sopina E, Sørensen J, Beyer N, Hasselbalch SG, Waldemar G. Cost-effectiveness of a randomised trial of physical activity in Alzheimer’s disease: a secondary analysis exploring patient and proxy-reported health-related quality of life measures in Denmark. BMJ Open. 2017;7:e015217.

    PubMed  PubMed Central  Google Scholar 

  67. 67.

    Gitlin LN, Hodgson N, Jutkowitz E, Pizzi L. The cost-effectiveness of a nonpharmacologic intervention for individuals with dementia and family caregivers: the tailored activity program. Am J Geriatr Psychiatry. 2010;18:510–9.

    PubMed  PubMed Central  Google Scholar 

  68. 68.

    Sanders GD, Neumann PJ, Basu A, Brock DW, Feeny D, Krahn M, et al. Recommendations for conduct, methodological practices, and reporting of cost-effectiveness analyses. JAMA. 2016;316:1093.

    PubMed  Google Scholar 

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This research was supported by the National Solidarity Fund for Autonomy project “PERRIER-AAP16-Hand7-25” through the call for proposals launched by the IReSP in 2016. H.A. is supported by an NIHR Career Development Fellowship (CDF-2015-08-025) to work on “Techniques to include carer quality of life in economic evaluation”. The authors are grateful to Sophie Domingues-Montanari who helped with the final editing of the manuscript. The authors also thank the reviewers, Salah Ghabri and Sandy Tubeuf, for their valuable comments.

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Concept and overall approach: WG, HA and LP. Search strategy: WG, HA and LP. Review of search results and selection of studies: WG, HA and LP. Critical appraisal: WG and LP. Interpretation of results: WG, HA and LP. Drafting of the manuscript: WG. Critical review of the manuscript: WG and LP.

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Correspondence to Wilfried Guets.

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National Solidarity Fund for Autonomy project “PERRIER-AAP16-Hand7-25” through the call for proposals launched by the IReSP.

Conflict of interest

The Fondation France Répit supported the travel and the registration of Wilfried Guets to the ISPOR Europe 2018 and ISPOR Europe 2019 conferences, as well as the travel and the accommodation of Wilfried Guets to the University of Birmingham. The Fondation France Répit also supported the travel and the registration of Lionel Perrier for the ISPOR Europe 2019 conference. Hareth Al-Janabi declares that he has no conflicts of interest.

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Guets, W., Al-Janabi, H. & Perrier, L. Cost–Utility Analyses of Interventions for Informal Carers: A Systematic and Critical Review. PharmacoEconomics 38, 341–356 (2020).

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