Advertisement

PharmacoEconomics

, Volume 31, Issue 6, pp 489–500 | Cite as

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

  • Eve Wittenberg
  • Lisa A. Prosser
Systematic Review

Abstract

Background

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.

Objective

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.

Methods

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.

Results

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.

Conclusions

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.

Keywords

Spillover Effect Family Caregiver Spina Bifida Hypothetical Scenario Medical Expenditure Panel Survey 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

Notes

Acknowledgements

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.

Supplementary material

40273_2013_40_MOESM1_ESM.docx (14 kb)
Supplementary material 1 (DOCX 14 kb)

References

  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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle Scholar
  3. 3.
    Christakis NA. Social networks and collateral health effects. BMJ. 2004;329:184–5.PubMedCrossRefGoogle Scholar
  4. 4.
    Rigby H, Gubitz G, Phillips S. A systematic review of caregiver burden following stroke. Int J Stroke. 2009;4:285–92.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle Scholar
  7. 7.
    Awad AG, Voruganti LN. The burden of schizophrenia on caregivers: a review. Pharmacoeconomics. 2008;26:149–62.PubMedCrossRefGoogle Scholar
  8. 8.
    Brouwer WBF. Too important to ignore: informal caregivers and other significant others. Pharmacoeconomics. 2006;24:39–41.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle Scholar
  18. 18.
    Osborn T. The psychosocial impact of parental cancer on children and adolescents: a systematic review. Psycho-oncology. 2007;16:101–26.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle Scholar
  31. 31.
    Al-Janabi H, Flynn TN, Coast J. QALYs and carers. Pharmacoeconomics. 2011;29:1015–23.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.CrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.CrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle 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.PubMedCrossRefGoogle Scholar

Copyright information

© Springer International Publishing Switzerland 2013

Authors and Affiliations

  1. 1.Center for Health Decision ScienceHarvard School of Public HealthBostonUSA
  2. 2.Child Health Evaluation and Research Unit, Division of General PediatricsUniversity of Michigan Health SystemAnn ArborUSA

Personalised recommendations