Disutility of Illness for Caregivers and Families: A Systematic Review of the Literature



Caring for an ill or disabled family member imposes a well-documented burden on the caregiver. The benefits of a health intervention may be underestimated if “spillover” effects on family members are not captured, resulting in inaccurate conclusions of economic evaluations.


To provide an estimate of, and to summarize measurement approaches for, the spillover disutility of illness on family members, relatives, and caregivers, through a systematic review of the literature.


The medical (PubMED), psychology (PsycINFO), and economics (EconLit) literatures were searched from inception through February 2012 for published studies measuring spillover disutility of illness on family members and caregivers. Inclusion criteria were (1) studies using preference-based measures of health-related quality of life, and (2) studies reporting spillover disutility, or (3) studies reporting data from which a spillover disutility could be inferred.


Fifteen studies were included in this review: seven reported estimates of spillover disutility and eight reported data from which disutility could be inferred. Three studies found no disutility associated with spillover, whereas 12 found measurable effects as large as −0.718 (and two found evidence of positive spillover in subsets of their samples). Generic (indirect) utility instruments were primarily used to measure spillover, including the EQ-5D, QWB, and HUI (n = 13), though two studies used modified versions of the time trade-off technique. Illnesses studied included childhood disorders (e.g., spina bifida, congenital malformations), diseases of the elderly (e.g., Alzheimer’s disease and dementia), physically disabling conditions (e.g., arthritis, multiple sclerosis), and medical conditions such as cancer and stroke. The persons affected by spillover included parents, grandparents, spouses/partners, other family caregivers, and household members.


There is a limited literature on the spillover disutility of illness on family members and caregivers, providing some specific estimates of a generally small, negative effect for particular conditions and individuals. Measurement methods vary across studies and a consensus approach has not yet been reached. Evidence suggests that the inclusion of spillover effects in economic evaluations would increase the relative effectiveness of interventions that address conditions with spillover compared to those without, though such differential benefits may be limited to such specific circumstances.

This is a preview of subscription content, access via your institution.

Fig. 1


  1. 1.

    Christakis NA, Fowler JH. The spread of obesity in a large social network over 32 years. N Engl J Med. 2007;357:370–9.

    PubMed  Article  CAS  Google Scholar 

  2. 2.

    Christakis NA, Fowler JH. The collective dynamics of smoking in a large social network. N Engl J Med. 2008;358:2249–58.

    PubMed  Article  CAS  Google Scholar 

  3. 3.

    Christakis NA. Social networks and collateral health effects. BMJ. 2004;329:184–5.

    PubMed  Article  Google Scholar 

  4. 4.

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

    PubMed  Article  CAS  Google Scholar 

  5. 5.

    Vellone E, Piras G, Talucci C, Cohen M. Quality of life of caregivers of people with Alzheimer’s disease. J Adv Nurs. 2008;61:222–31.

    PubMed  Article  Google Scholar 

  6. 6.

    Etters L, Goodall D, Harrison BE. Caregiver burden among dementia patient caregivers: a review of the literature. J Am Acad Nurse Pract. 2008;20:423–8.

    PubMed  Article  Google Scholar 

  7. 7.

    Awad AG, Voruganti LN. The burden of schizophrenia on caregivers: a review. Pharmacoeconomics. 2008;26:149–62.

    PubMed  Article  Google Scholar 

  8. 8.

    Brouwer WBF. Too important to ignore: informal caregivers and other significant others. Pharmacoeconomics. 2006;24:39–41.

    PubMed  Article  Google Scholar 

  9. 9.

    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;67:111–21.

    PubMed  Article  Google Scholar 

  10. 10.

    Bobinac A, van Exel NJ, Rutten FF, Brouwer WB. Caring for and caring about: disentangling the caregiver effect and the family effect. J Health Econ. 2010;29:549–56.

    PubMed  Article  Google Scholar 

  11. 11.

    Brouwer WB, van Exel NJ, van den Berg B, van den Bos GA, Koopmanschap MA. Process utility from providing informal care: the benefit of caring. Health Policy. 2005;74:85–99.

    PubMed  Article  Google Scholar 

  12. 12.

    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;15:1005–21.

    PubMed  Article  CAS  Google Scholar 

  13. 13.

    Klassen A, Raina P, Reineking S, Dix D, Pritchard S, O’Donnell M. Developing a literature base to understand the caregiving experience of parents of children with cancer: a systematic review of factors related to parental health and well-being. Support Care Cancer. 2007;15:807–18.

    PubMed  Article  Google Scholar 

  14. 14.

    Klassen AF, Gulati S, Granek L, et al. Understanding the health impact of caregiving: a qualitative study of immigrant parents and single parents of children with cancer. Qual Life Res. 2012;21(9):1595−605.

    Google Scholar 

  15. 15.

    Brisson M, Senecal M, Drolet M, Mansi JA. Health-related quality of life lost to rotavirus-associated gastroenteritis in children and their parents: a Canadian prospective study. Pediatr Infect Dis J. 2010;29:73–5.

    PubMed  Article  Google Scholar 

  16. 16.

    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;30:355–65.

    PubMed  Article  Google Scholar 

  17. 17.

    Couper J, Bloch S, Love A, Macvean M, Duchesne G, Kissane D. Psychosocial adjustment of female partners of men with prostate cancer: a review of the literature. Psycho-oncology. 2006;15:937–53.

    PubMed  Article  Google Scholar 

  18. 18.

    Osborn T. The psychosocial impact of parental cancer on children and adolescents: a systematic review. Psycho-oncology. 2007;16:101–26.

    PubMed  Article  Google Scholar 

  19. 19.

    Koehly LM, Peters JA, Kuhn N, et al. Sisters in hereditary breast and ovarian cancer families: communal coping, social integration, and psychological well-being. Psycho-oncology. 2008;17:812–21.

    PubMed  Article  Google Scholar 

  20. 20.

    Packman W, Greenhalgh J, Chesterman B, et al. Siblings of pediatric cancer patients: the quantitative and qualitative nature of quality of life. J Psychosoc Oncol. 2005;23:87–108.

    PubMed  Article  Google Scholar 

  21. 21.

    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;15:129–36.

    PubMed  Article  CAS  Google Scholar 

  22. 22.

    Davidson T, Krevers B, Levin LA. In pursuit of QALY weights for relatives: empirical estimates in relatives caring for older people. Eur J Health Econ. 2008;9:285–92.

    PubMed  Article  Google Scholar 

  23. 23.

    Serrano-Aguilar PG, Lopez-Bastida J, Yanes-Lopez V. Impact on health-related quality of life and perceived burden of informal caregivers of individuals with Alzheimer’s disease. Neuroepidemiology. 2006;27:136–42.

    PubMed  Article  CAS  Google Scholar 

  24. 24.

    van Exel N, Koopmanshap M, van de Berg B, Brouwer W, van den Bos G. Burden of informal caregiving for stroke patients: identification of caregivers at risk of adverse health effects. Cerebrovasc Dis. 2005;19:11–7.

    PubMed  Article  Google Scholar 

  25. 25.

    Pinquart M, Sorensen S. Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging. 2003;18:250–67.

    PubMed  Article  Google Scholar 

  26. 26.

    Pinquart M, Sorensen S. Correlates of physical health of informal caregivers: a meta-analysis. J Gerontol B Psychol Sci Soc Sci. 2007;62:P126–37.

    PubMed  Article  Google Scholar 

  27. 27.

    Kuster PA, Merkle CJ. Caregiving stress, immune function, and health: implications for research with parents of medically fragile children. Issues Compr Pediatr Nurs. 2004;27:257–76.

    PubMed  Article  Google Scholar 

  28. 28.

    Wittenberg E, Ritter GA, Prosser LA. Evidence of spillover of illness among household members: EQ-5D scores from a US sample. Med Decis Making. 2013;33(2):235–43.

    Google Scholar 

  29. 29.

    Poley MJ, Brouwer WB, van Exel NJ, Tibboel D. Assessing health-related quality-of-life changes in informal caregivers: an evaluation in parents of children with major congenital anomalies. Qual Life Res. 2012;21:849–61.

    PubMed  Article  Google Scholar 

  30. 30.

    Argyriou AA, Karanasios P, Ifanti AA, et al. Quality of life and emotional burden of primary caregivers: a case-control study of multiple sclerosis patients in Greece. Qual Life Res. 2011;20:1663–8.

    PubMed  Article  Google Scholar 

  31. 31.

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

    PubMed  Article  Google Scholar 

  32. 32.

    Gusi N, Prieto J, Madruga M, Garcia J, Gonzalez-Guerrero J. Health-related quality of life and fitness of the caregivers of patient with dementia. Med Sci Sports Exerc. 2009;41:1182–7.

    PubMed  Article  Google Scholar 

  33. 33.

    Northouse L, Mood D, Montie J, et al. Living with prostate cancer: patients’ and spouses’ psychosocial status and quality of life. J Clin Oncol. 2007;25:4171–7.

    PubMed  Article  Google Scholar 

  34. 34.

    Northouse L, Williams AL, Given B, McCorkle R. Psychosocial care for family caregivers of patients with cancer. J Clin Oncol. 2012;30:1227–34.

    PubMed  Article  Google Scholar 

  35. 35.

    Carmack Taylor CL, Badr H, Lee JH, et al. Lung cancer patients and their spouses: psychological and relationship functioning within 1 month of treatment initiation. Ann Behav Med. 2008;36:129–40.

    Google Scholar 

  36. 36.

    Wittenberg E, Saada A, Prosser LA. How illness affects family members: domains of well-being affected by “spillover”: abstract. Med Decis Making. 2013;33:E97.

    Google Scholar 

  37. 37.

    Gold M, Siegel J, Russell L, Weinstein M. Cost-effectiveness in health and medicine. New York: Oxford University Press; 1996.

    Google Scholar 

  38. 38.

    Basu A, Meltzer D. Implications of spillover effects within the family for medical cost-effectiveness analysis. J Health Econ. 2005;24:751–73.

    PubMed  Article  Google Scholar 

  39. 39.

    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  Article  Google Scholar 

  40. 40.

    Bonomi AE, Boudreau DM, Fishman PA, Meenan RT, Revicki DA. Is a family equal to the sum of its parts? Estimating family-level well-being for cost-effectiveness analysis. Qual Life Res. 2005;14:1127–33.

    PubMed  Article  Google Scholar 

  41. 41.

    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;8:557–61.

    PubMed  Article  Google Scholar 

  42. 42.

    Davidson T, Levin LA. Is the societal approach wide enough to include relatives? Incorporating relatives’ costs and effects in a cost-effectiveness analysis. Appl Health Econ Health Policy. 2010;8:25–35.

    PubMed  Article  Google Scholar 

  43. 43.

    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;26:269–80.

    PubMed  Article  Google Scholar 

  44. 44.

    Weeks J. Valuing outcomes. In: Hunink M, Glasziou P, editors. Decision making in health and medicine integrating evidence and values. New York: Cambridge University Press; 2001. pp. 88–127.

    Google Scholar 

  45. 45.

    Tilford JM, Grosse SD, Robbins JM, Pyne JM, Cleves MA, Hobbs CA. Health state preference scores of children with spina bifida and their caregivers. Qual Life Res. 2005;14:1087–98.

    PubMed  Article  Google Scholar 

  46. 46.

    Hunink M, Glasziou P. Decision making in health and medicine. Integrating evidence and values. Cambridge: Cambridge University Press; 2001.

    Google Scholar 

  47. 47.

    Grosse SD, Flores A, Ouyang L, Robbins JM, Tilford JM. Impact of spina bifida on parental caregivers: findings from a survey of Arkansas families. J Child Fam Stud. 2009;18:574–81.

    Article  Google Scholar 

  48. 48.

    Kuhlthau K, Kahn R, Hill KS, Gnanasekaran S, Ettner SL. The well-being of parental caregivers of children with activity limitations. Matern Child Health J. 2008;14:155–63.

    PubMed  Article  Google Scholar 

  49. 49.

    Neumann PJ, Kuntz KM, Leon J, et al. Health utilities in Alzheimer’s disease: a cross-sectional study of patients and caregivers. Med Care. 1999;37:27–32.

    PubMed  Article  CAS  Google Scholar 

  50. 50.

    Mohide EA, Torrance GW, Streiner DL, Pringle DM, Gilbert R. Measuring the wellbeing of family caregivers using the time trade-off technique. J Clin Epidemiol. 1988;41:475–82.

    PubMed  Article  CAS  Google Scholar 

  51. 51.

    Brouwer WB, van Exel NJ, van de Berg B, Dinant HJ, Koopmanschap MA, van den Bos GA. Burden of caregiving: evidence of objective burden, subjective burden, and quality of life impacts on informal caregivers of patients with rheumatoid arthritis. Arthr Rheum. 2004;51:570–7.

    Article  Google Scholar 

  52. 52.

    Davidson T, Levin L. Is the societal approach wide enough to include relatives? Incorporating relatives’ costs and effects in a cost-effectiveness analysis. Appl Health Econ Health Policy. 2010;8:25–35.

    PubMed  Article  Google Scholar 

  53. 53.

    Al-Janabi H, Flynn TN, Coast J. Estimation of a preference-based carer experience scale. Med Decis Making. 2011;31:458–68.

    PubMed  Article  Google Scholar 

  54. 54.

    Prosser LA, Grosse SD, Wittenberg E. Health utility elicitation: is there still a role for direct methods? Pharmacoeconomics. 2012;30:83–6.

    PubMed  Article  Google Scholar 

  55. 55.

    Luo N, Johnson J, Coons SJ. Using instrument-defined health state transitions to estimate minimally important differences for four preference-based health-related quality of life instruments. Med Care. 2010;48:365–71.

    PubMed  Article  Google Scholar 

Download references


The authors thank Kara Lamarand, MPH, Lisa Lee, MS, and Gail Strickler, PhD for helpful research assistance with the review, Adrianna Saada, MPH for assistance in preparing the manuscript, and Tara Lavelle, PhD, two anonymous reviewers, and the editor of this journal for helpful comments on previous drafts. EW and LAP conceived of and received funding for the study; EW directed the study and wrote the final manuscript, and takes responsibility for the integrity and accuracy of the analysis; both authors reviewed and contributed to the final manuscript. Neither author has conflicts of interest to report. This work was supported by awards numbers 7R01NR011880 from the National Institute of Nursing Research and 7K02HS014010 from the Agency for Health Care Research and Quality, both to EW. The content is solely the responsibility of the authors and does not necessarily represent the official views of the Agency for Health Care Research and Quality, the National Institute of Nursing Research, or the National Institutes of Health.

Author information



Corresponding author

Correspondence to Eve Wittenberg.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Supplementary material 1 (DOCX 14 kb)

Rights and permissions

Reprints and Permissions

About this article

Cite this article

Wittenberg, E., Prosser, L.A. Disutility of Illness for Caregivers and Families: A Systematic Review of the Literature. PharmacoEconomics 31, 489–500 (2013). https://doi.org/10.1007/s40273-013-0040-y

Download citation


  • Spillover Effect
  • Family Caregiver
  • Spina Bifida
  • Hypothetical Scenario
  • Medical Expenditure Panel Survey