Skip to main content
Log in

Family Spillover Effects: Are Economic Evaluations Misrepresenting the Value of Healthcare Interventions to Society?

  • Current Opinion
  • Published:
Applied Health Economics and Health Policy Aims and scope Submit manuscript

Abstract

The societal impacts of health interventions are seldom incorporated into health economic evaluations, including the impact that illness can have on informal or unpaid caregivers and other family members (i.e., “family spillover effects”). Previous research has demonstrated that by excluding family spillover effects, the value of health interventions may be underestimated on average. In this commentary, we discuss how the inclusion of spillover effects influences how we value interventions and, given the extent to which caregiver/family effects are largely not captured or known, propose ways in which these data could be more systematically collected or estimated and used by researchers. These recommendations include prioritizing data collection alongside clinical trials and patient registries, engaging expert opinion panels, and developing mapping algorithms for estimating caregiver/family utility values from non-preference-based caregiver health-related quality-of-life measures and/or from patient preference-based measures.

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

Access this article

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

Instant access to the full article PDF.

Similar content being viewed by others

References

  1. Owens DK, Whitlock EP, Henderson J, Pignone MP, Krist AH, Bibbins-Domingo K, et al. Use of decision models in the development of evidence-based clinical preventive services recommendations: methods of the U.S. Preventive Services Task Force. Ann Intern Med. 2016;165(7):501.

    Article  Google Scholar 

  2. Burwell SM. Setting value-based payment goals: HHS efforts to improve U.S. health care. N Engl J Med. 2015;372(10):897–9.

    Article  CAS  Google Scholar 

  3. CVS Health. Current and new approaches to making drugs more affordable. 2018. https://cvshealth.com/sites/default/files/cvs-health-current-and-new-approaches-to-making-drugs-more-affordable.pdf. Accessed 13 Aug 2022.

  4. National Institute for Health and Care Excellence (NICE). Introduction to health technology evaluation. NICE health technology evaluations: the manual. https://www.nice.org.uk/process/pmg36/chapter/introduction-to-health-technology-evaluation. Accessed 31 May 2022.

  5. Canadian Agency for Drugs and Technologies in Health (CADTH). Guidelines for the economic evaluation of health technologies: Canada (4th edition). 2017;1–76.

  6. Garrison LP, Pauly MV, Willke RJ, Neumann PJ. An overview of value, perspective, and decision context: a health economics approach: an ISPOR Special Task Force report [2]. Value Health. 2018;21(2):124–30.

    Article  Google Scholar 

  7. Institute for Clinical and Economic Review. 2020-2023 value assessment framework. 2020. http://icerorg.wpengine.com/wp-content/uploads/2020/10/ICER_2020_2023_VAF_102220.pdf. Accessed 13 Aug 2022.

  8. Neumann PJ, Ganiats TG, Russell LB, Sanders GD, Siegel JE, editors. Cost-effectiveness in health and medicine. 2nd ed. New York: Oxford University Press; 2016: p. 536. https://oxford.universitypressscholarship.com/10.1093/acprof:oso/9780190492939.001.0001/acprof-9780190492939. Accessed 23 Jan 2022.

  9. Neumann PJ, Kamal-Bahl S. Should value frameworks take a “societal perspective”? Health Affairs. https://www.healthaffairs.org/do/10.1377/hblog20170906.061833/full/. Accessed 9 Sep 2019.

  10. National Institute for Health and Care Excellence (NICE). NICE health technology evaluations: the manual. 2022. https://www.nice.org.uk/process/pmg36/resources/nice-health-technology-evaluations-the-manual-pdf-72286779244741. Accessed 13 Aug 2022.

  11. Public Health Agency of Canada: Canada’s National Advisory Committee on Immunization (NACI). Process for incorporating economic evidence into federal vaccine recommendations stakeholder consultation. 2021. https://www.canada.ca/content/dam/phac-aspc/documents/programs/process-incorporating-economic-evidence-federal-vaccine-recommendations-stakeholder-consultation/document/economic-process-consultation.pdf. Accessed 13 Aug 2022.

  12. Al-Janabi H, Wittenberg E, Donaldson C, Brouwer W. The relative value of carer and patient quality of life: a person trade-off (PTO) study. Soc Sci Med. 2022;1(292): 114556.

    Article  Google Scholar 

  13. Silver MC, Neumann PJ, Ma S, Kim DD, Cohen JT, Nyaku M, et al. Frequency and impact of the inclusion of broader measures of value in economic evaluations of vaccines. Vaccine. 2021;39(46):6727–34.

    Article  Google Scholar 

  14. Kim DD, Silver MC, Kunst N, Cohen JT, Ollendorf DA, Neumann PJ. Perspective and costing in cost-effectiveness analysis, 1974–2018. Pharmacoeconomics. 2020;38(10):1135–45.

    Article  Google Scholar 

  15. Bobinac A, van Exel NJA, Rutten FFH, Brouwer WBF. Caring for and caring about: disentangling the caregiver effect and the family effect. J Health Econ. 2010;29(4):549–56.

    Article  Google Scholar 

  16. 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.

    Article  Google Scholar 

  17. Bobinac A, van Exel NJA, Rutten FFH, Brouwer WBF. Health effects in significant others: separating family and care-giving effects. Med Decis Mak. 2011;31(2):292–8.

    Article  Google Scholar 

  18. 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 Mak. 2010;30(3):355–65.

    Article  Google Scholar 

  19. Wittenberg E, Prosser LA. Health as a family affair. N Engl J Med. 2016;374(19):1804–6.

    Article  CAS  Google Scholar 

  20. Thompson T, Ketcher D, Gray TF, Kent EE. The Dyadic Cancer Outcomes Framework: a general framework of the effects of cancer on patients and informal caregivers. Soc Sci Med. 2021;1(287): 114357.

    Article  Google Scholar 

  21. Bell JF, Whitney RL, Young HM. Family caregiving in serious illness in the United States: recommendations to support an invisible workforce. J Am Geriatr Soc. 2019;67(S2):S451–6.

    Article  Google Scholar 

  22. 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.

    Article  Google Scholar 

  23. Rainville C, Skufca L, Mehegan L. Family caregiving and out-of-pocket costs: 2016 report. Washington, DC: AARP Research; 2016. https://www.aarp.org/content/dam/aarp/research/surveys_statistics/ltc/2016/family-caregiving-costs.doi.10.26419-2Fres.00138.001.pdf. Accessed 22 Jan 2022.

  24. Leech, Ashley A., Lin PJ, D’Cruz B, Neumann PJ, Parsons S, Mohit B, et al. Family and caregiver spillover effects in cancer cost-effectiveness analyses. In 39th annual meeting of the Society for Medical Decision Making. https://smdm.confex.com/smdm/2017/meetingapp.cgi/Paper/11063. Accessed 13 Nov 2018.

  25. Lavelle TA, D’Cruz BN, Mohit B, Ungar WJ, Prosser LA, Tsiplova K, et al. Family spillover effects in pediatric cost-utility analyses. Appl Health Econ Health Policy. 2019;17(2):163–74.

    Article  Google Scholar 

  26. Lin PJ, D’Cruz B, Leech AA, Neumann PJ, SanonAigbogun M, Oberdhan D, et al. Family and caregiver spillover effects in cost-utility analyses of Alzheimer’s disease interventions. Pharmacoeconomics. 2019;37(4):597–608.

    Article  Google Scholar 

  27. Leech A, Lavelle T, Lin PJ, DCruz B, Mohit B, Parsons S. Family and caregiver health-related quality of life from cancer: a systematic review of the literature. AcademyHealth; 2018. https://academyhealth.confex.com/academyhealth/2018arm/meetingapp.cgi/Paper/25882. Accessed 30 Dec 2019.

  28. Sharma D, Aggarwal AK, Downey LE, Prinja S. National healthcare economic evaluation guidelines: a cross-country comparison. Pharmacoecon Open. 2021;5(3):349–64.

    Article  Google Scholar 

  29. Pennington BM. Inclusion of carer health-related quality of life in National Institute for Health and Care excellence appraisals. Value Health. 2020;23(10):1349–57.

    Article  Google Scholar 

  30. Lin PJ, Neumann PJ. Valuing Alzheimer disease therapies: considering costs and benefits beyond the patient. JAMA Netw Open. 2021;4(10): e2131913.

    Article  Google Scholar 

  31. 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.

    Article  Google Scholar 

  32. Krol M, Papenburg J, Koopmanschap M, Brouwer W. Do productivity costs matter? Pharmacoeconomics. 2011;29(7):601–19.

    Article  Google Scholar 

  33. Institute for Clinical and Economic Review (ICER). Spinraza® and Zolgensma® for spinal muscular atrophy: effectiveness and value: final evidence report. 2019. https://icer.org/wp-content/uploads/2020/10/ICER_SMA_Final_Evidence_Report_110220.pdf. Accessed 9 Sep 2019.

  34. Lavelle TA, Wittenberg E, Lamarand K, Prosser LA. Variation in the spillover effects of illness on parents, spouses, and children of the chronically ill. Appl Health Econ Health Policy. 2014;12(2):117–24.

    Article  Google Scholar 

  35. Clark MM, Rummans TA, Sloan JA, Jensen A, Atherton PJ, Frost MH, et al. Quality of life of caregivers of patients with advanced-stage cancer. Am J Hosp Palliat Care. 2006;23(3):185–91.

    Article  Google Scholar 

  36. Jassem J, Penrod JR, Goren A, Gilloteau I. Caring for relatives with lung cancer in Europe: an evaluation of caregivers’ experience. Qual Life Res. 2015;24(12):2843–52.

    Article  Google Scholar 

  37. Goren A, Gilloteau I, Lees M, DaCosta DM. Quantifying the burden of informal caregiving for patients with cancer in Europe. Support Care Cancer. 2014;22(6):1637–46.

    Article  Google Scholar 

  38. Volk RJ, Cantor SB, Cass AR, Spann SJ, Weller SC, Krahn MD. Preferences of husbands and wives for outcomes of prostate cancer screening and treatment. J Gen Intern Med. 2004;19(4):339–48.

    Article  Google Scholar 

  39. Song JI, Shin DW, Choi JY, Kang J, Baek YJ, Mo HN, et al. Quality of life and mental health in the bereaved family members of patients with terminal cancer. Psychooncology. 2012;21(11):1158–66.

    Article  Google Scholar 

  40. Vrettos I, Kamposioras K, Kontodimopoulos N, Pappa E, Georgiadou E, Haritos D, et al. Comparing health-related quality of life of cancer patients under chemotherapy and of their caregivers. Sci World J. 2012;2012: 135283.

    Article  Google Scholar 

  41. Lee HJ, Park EC, Kim SJ, Lee SG. Quality of life of family members living with cancer patients. Asian Pac J Cancer Prev. 2015;16(16):6913–7.

    Article  Google Scholar 

  42. Song JI, Shin DW, Choi JY, Kang J, Baik YJ, Mo H, et al. Quality of life and mental health in family caregivers of patients with terminal cancer. Support Care Cancer. 2011;19(10):1519–26.

    Article  Google Scholar 

  43. Iconomou G, Viha A, Kalofonos HP, Kardamakis D. Impact of cancer on primary caregivers of patients receiving radiation therapy. Acta Oncol Stockh Swed. 2001;40(6):766–71.

    Article  CAS  Google Scholar 

  44. Prosser LA, Lamarand K, Gebremariam A, Wittenberg E. Measuring family HRQoL spillover effects using direct health utility assessment. Med Decis Mak. 2015;35(1):81–93.

    Article  Google Scholar 

  45. Brehaut JC, Guèvremont A, Arim RG, Garner RE, Miller AR, McGrail KM, et al. Changes in caregiver health in the years surrounding the birth of a child with health problems: administrative data from British Columbia. Med Care. 2019;57(5):369–76.

    Article  Google Scholar 

  46. Havinga PJ, Boschloo L, Bloemen AJP, Nauta MH, de Vries SO, Penninx BWJH, et al. Doomed for disorder? High incidence of mood and anxiety disorders in offspring of depressed and anxious patients: a prospective cohort study. J Clin Psychiatry. 2017;78(1):e8-17.

    Article  Google Scholar 

  47. Wittenberg E, James LP, Prosser LA. Spillover effects on caregivers’ and family members’ utility: a systematic review of the literature. Pharmacoeconomics. 2019;37(4):475–99.

    Article  Google Scholar 

  48. Brazier JE, Roberts J. The estimation of a preference-based measure of health from the SF-12. Med Care. 2004;42(9):851–9.

    Article  Google Scholar 

  49. Brazier J, Roberts J, Deverill M. The estimation of a preference-based measure of health from the SF-36. J Health Econ. 2002;21(2):271–92.

    Article  Google Scholar 

  50. The EuroQol Group. EuroQol: a new facility for the measurement of health-related quality of life. Health Policy. 1990;16(3):199–208.

    Article  Google Scholar 

  51. Khanna R, Jariwala K, Bentley JP. Psychometric properties of the EuroQol Five Dimensional Questionnaire (EQ-5D-3L) in caregivers of autistic children. Qual Life Res. 2013;22(10):2909–20.

    Article  Google Scholar 

  52. Bhadhuri A, Jowett S, Jolly K, Al-Janabi H. A comparison of the validity and responsiveness of the EQ-5D-5L and SF-6D for measuring health spillovers: a study of the family impact of meningitis. Med Decis Mak. 2017;37(8):882–93.

    Article  Google Scholar 

  53. McLoughlin C, Goranitis I, Al-Janabi H. Validity and responsiveness of preference-based quality-of-life measures in informal carers: a comparison of 5 measures across 4 conditions. Value Health. 2020;23(6):782–90.

    Article  Google Scholar 

  54. Al-Janabi H, N Flynn T, Coast J. Development of a self-report measure of capability wellbeing for adults: the ICECAP-A. Qual Life Res. 2012;21(1):167–76.

  55. Al-Janabi H, Coast J, Flynn TN. 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.

    Article  Google Scholar 

  56. Brouwer WBF, van Exel NJA, van Gorp B, Redekop WK. 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(6):1005–21.

    Article  CAS  Google Scholar 

  57. Rand SE, Malley JN, Netten AP, Forder JE. Factor structure and construct validity of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer). Qual Life Res. 2015;24(11):2601–14.

    Article  Google Scholar 

  58. Al-Janabi H, Flynn TN, Coast J. QALYs and carers. Pharmacoeconomics. 2011;29(12):1015–23.

    Article  Google Scholar 

  59. Prasad M, Wahlqvist P, Shikiar R, Shih YCT. A review of self-report instruments measuring health-related work productivity: a patient-reported outcomes perspective. Pharmacoeconomics. 2004;22(4):225–44.

    Article  Google Scholar 

  60. Lerner D, Parsons SK, Chang H, Visco ZL, Pawlecki JB. The reliability and validity of the Caregiver Work Limitations Questionnaire. J Occup Environ Med. 2015;57(1):22–31.

    Article  Google Scholar 

  61. Hubens K, Krol M, Coast J, Drummond MF, Brouwer WBF, de Groot CAU, et al. Measurement instruments of productivity loss of paid and unpaid work: a systematic review and assessment of suitability for health economic evaluations from a societal perspective. Value Health. 2021;24(11):1686–99.

    Article  Google Scholar 

  62. Bojke L, Soares M, Claxton K, Colson A, Fox A, Jackson C, et al. Developing a reference protocol for structured expert elicitation in health-care decision-making: a mixed-methods study. Health Technol Assess. 2021;25(37):1–124.

    Article  Google Scholar 

  63. University of Sheffield. SHELF: the Sheffield Elicitation Framework. http://www.tonyohagan.co.uk/shelf/. Accessed 8 Mar 2022.

  64. Meregaglia M, Whittal A, Nicod E, Drummond M. “Mapping” health state utility values from non-preference-based measures: a systematic literature review in rare diseases. Pharmacoeconomics. 2020;38(6):557–74.

    Article  Google Scholar 

  65. Longworth L, Rowen D. Mapping to Obtain EQ-5D utility values for use in NICE health technology assessments. Value Health. 2013;16(1):202–10.

    Article  Google Scholar 

  66. Cangelosi MJ, Bliss S, Chang H, Dubois RW, Lerner D, Neumann PJ, et al. Imputing productivity gains from clinical trials. J Occup Environ Med. 2012;54(7):826–33.

    Article  Google Scholar 

  67. Rowen D, Dixon S, Hernández-Alava M, Mukuria C. Estimating informal care inputs associated with EQ-5D for use in economic evaluation. Eur J Health Econ. 2016;17(6):733–44.

    Article  Google Scholar 

  68. 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(1):93–103.

    Article  Google Scholar 

  69. McCabe C. Expanding the scope of costs and benefits for economic evaluations in health: some words of caution. Pharmacoeconomics. 2019;37(4):457–60.

    Article  Google Scholar 

  70. Hoefman RJ, van Exel J, Brouwer W. How to include informal care in economic evaluations. Pharmacoeconomics. 2013;31(12):1105–19.

    Article  Google Scholar 

  71. Lavelle TA, Weinstein MC, Newhouse JP, Munir K, Kuhlthau KA, Prosser LA. Parent preferences for health outcomes associated with autism spectrum disorders. Pharmacoeconomics. 2019;37(4):541–51.

    Article  Google Scholar 

  72. Al-Janabi H, van Exel J, Brouwer W, Coast J. A framework for including family health spillovers in economic evaluation. Med Decis Mak. 2016;36(2):176–86.

    Article  Google Scholar 

  73. Al-Janabi H, Van Exel J, Brouwer W, Trotter C, Glennie L, Hannigan L, et al. Measuring health spillovers for economic evaluation: a case study in meningitis. Health Econ. 2016;25(12):1529–44.

    Article  Google Scholar 

  74. Canaway A, Al-Janabi H, Kinghorn P, Bailey C, Coast J. Close-person spill-overs in end-of-life care: using hierarchical mapping to identify whose outcomes to include in economic evaluations. Pharmacoeconomics. 2019;37(4):573–83.

    Article  Google Scholar 

  75. National Institute for Health and Care Excellence (NICE). CHTE methods review: health-related quality of life. Task and Finish Group report. 2020. https://rees-france.com/wp-content/uploads/2020/12/2020-CHTE-2020-Health-related-quality-of-life-.pdf. Accessed 13 Aug 2022.

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Ashley A. Leech.

Ethics declarations

Funding

No funding was received for the preparation of this article.

Conflicts of interest/competing interests

The authors report no conflicts of interest that are directly relevant to the content of this article.

Ethics approval

Not applicable.

Consent to participate

Not applicable.

Consent for publication

Not applicable.

Availability of data and material

Data are available upon request to the authors.

Code availability

Not applicable.

Authors’ contributions

All authors have contributed significantly to the work.

Rights and permissions

Springer Nature or its licensor holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Leech, A.A., Lin, PJ., D’Cruz, B. et al. Family Spillover Effects: Are Economic Evaluations Misrepresenting the Value of Healthcare Interventions to Society?. Appl Health Econ Health Policy 21, 5–10 (2023). https://doi.org/10.1007/s40258-022-00755-8

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s40258-022-00755-8

Navigation