Skip to main content
Log in

Incorporating carer effects into economic evaluation

  • Original Research Article
  • Published:
PharmacoEconomics Aims and scope Submit manuscript

Abstract

Background: Despite great interest in the development of methods used in the economic evaluation of health technologies, the effects of carer costs and quality of life (QOL) on the cost effectiveness of treatments has not been widely explored. Yet carer effects are clearly evident in the literature and relevant to the perspective of many published economic evaluations.

Objective: To examine whether patient QOL is associated with carer time and carer QOL.

Methods: We used two datasets to investigate carer effects. Firstly, we used 40 312 cases from the Health Outcomes Data Repository (HODaR) to assess the relationship between patient utility, using the EuroQoL (EQ)-5D, and the number of days care needed from friends and relatives. The stability of the relationship across patient subgroups was assessed by replicating the analysis in ten disease groups. Secondly, we used 64 cases from a study of patients with Alzheimer’s disease and their primary carer. These data allowed us to estimate the relationships between patient and carer utility, using the EQ-5D, and patient utility and carer burden using the Community Dementia Quality of Life Profile (CDQLP).

Results: For carer time, a linear model showed that each 0.1-point reduction in patient utility was associated with a 2.5-day increase in carer time over a 6-week period. A more general model, based on EQ-5D domain scores, was better specified and showed that decreased functioning within each domain is associated with increased carer time. Problems with self-care and usual activities have the greatest impact on carer time. These models do not appear to be stable across different disease groups. For carer utility, the relationships between carer and patient utility have low explanatory power and are poorly specified. A clearer relationship is shown between carer burden and utility, such that when sociodemographic covariates are introduced, the relationship reaches conventional levels of statistical significance (p < 0.05).

Conclusions: The preliminary work described here shows that improving patient QOL may reduce the need for carer time and improve carer QOL. Incorporating such effects into economic evaluations will change cost-per-QALY estimates, with the size of reduction dependent on the domains of health affected by treatment. Clinical studies need to capture carer data so that we can better understand these effects, and how they impact on economic evaluation.

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.

Table I
Table II
Fig. 1
Table III
Fig. 2
Table IV

Similar content being viewed by others

References

  1. 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: 36–45

    Article  PubMed  Google Scholar 

  2. Gold MR, Siegel JE, Russell LB, et al., editors. Cost-effectiveness in health and medicine. New York: Oxford University Press, 1996

    Google Scholar 

  3. National Institute for Clinical Excellence. Guide to the methods of technology appraisal. London: National Institute for Clinical Excellence, 2004

    Google Scholar 

  4. Markowitz JS, Gutterman EM, Sadik K, et al. Health-related quality of life for carers of patients with Alzheimer disease. Alzheimer Dis Assoc Disord 2003; 17: 209–14

    Article  PubMed  Google Scholar 

  5. Boling W, Macrina DM, Clancy JP. The carer quality of life cystic fibrosis (CQOLCF) scale: modification and validation of an instrument to measure quality of life in cystic fibrosis family carers. Qual Life Res 2003; 12: 1119–26

    Article  PubMed  Google Scholar 

  6. Morimoto T, Schreiner AS, Asano H. Carer burden and healthrelated quality of life among Japanese stroke carers. Age Ageing 2003; 32: 218–23

    Article  PubMed  Google Scholar 

  7. Bromberg MB, Forshew DA. Comparison of instruments address in quality of life in patients with ALS and their carers. Neurology 2002; 58: 320–2

    Article  PubMed  Google Scholar 

  8. das Chaga Medeiros MM, Ferraz MB, Quaresma MR. The effect of rheumatoid arthritis on the quality of life of primary carers. J Rheumatol 2000; 27: 76–83

    Google Scholar 

  9. Lucke KY, Coccia H, Goode JS, et al. Quality of life in spinal cord injured individuals and their carers during the initial 6 months following rehabilitation. Qual Life Res 2004; 13: 97–110

    Article  PubMed  Google Scholar 

  10. Rose MA, Clark-Alexander B. Carers of children with HIV/ AIDS: quality of life and coping styles. J Assoc Nurses AIDS Care 1998; 9: 58–65

    Article  PubMed  CAS  Google Scholar 

  11. Deeken JF, Taylor KL, Mangan P, et al. Care for the carers: a review of self-reported instruments developed to measure the burden, needs, and quality of life of informal carers. J Pain Symptom Manage 2003; 26: 922–53

    Article  PubMed  Google Scholar 

  12. Kuroda A. Health-related quality of life assessed by EuroQol in carers of home care stroke patients [in Japanese]. Nippon Ronen Igakkai Zasshi 2003; 40 (4): 381–9

    Article  PubMed  Google Scholar 

  13. Chipchase DY, Lincoln NB. Factors associated with carer strain in carers of people with multiple sclerosis. Disabil Rehabil 2001; 23: 768–76

    Article  PubMed  CAS  Google Scholar 

  14. Schneider J, Murray J, Banerjee S, et al. EUROCARE: a crossnational study of co-resident spouse carers for people with Alzheimer’s disease: I. Factors associated with carer burden. Int J Geriatr Psychiatry 1999; 14: 651–61

    Article  PubMed  CAS  Google Scholar 

  15. Heyman MB, Harmatz P, Acree M, et al. Economic and psychologic costs for maternal carers of gastrostomy-dependent children. J Pediatr 2004; 145: 511–6

    Article  PubMed  Google Scholar 

  16. Andersson A, Carstensen J, Levin LA, et al. Costs of informal care for patients in advanced home care: a population-based study. Int J Technol Assess Health Care 2003; 19: 656–63

    Article  PubMed  Google Scholar 

  17. Amato MP, Battaglia MA, Caputo D, et al. The costs of multiple sclerosis: a cross-sectional, multicenter cost-of-illness study in Italy. J Neurol 2002; 249: 152–63

    Article  PubMed  Google Scholar 

  18. Moore MJ, Zhu CW, Clip EC. Informal costs of dementia care: estimates from the National Longitudinal Carer Study. J Gerontol B Psychol Sci Soc Sci 2001; 56: S219–28

    Article  PubMed  CAS  Google Scholar 

  19. Currie CJ, McEwan P, Peters JR, et al. The routine collation of health outcomes data from hospital treated subjects in the Health Outcomes Data Repository (HODaR): descriptive analysis from the first 20 000 subjects. Value Health 2005 Sep-Oct; 8 (5): 581–90

    Article  PubMed  Google Scholar 

  20. Dolan P. Modeling valuations for EuroQol health states. Med Care 1997; 35: 1095–108

    Article  PubMed  CAS  Google Scholar 

  21. Salek MS, Schwartzberg AJ, Bayer AJ. Evaluating health-related quality of life in patients with dementia: development of a proxy-administered questionnaire [abstract]. Pharm World Sci 1996; 18 Suppl. A: 6

    Google Scholar 

  22. Salek SS, Walker MD, Bayer AJ. The Community Dementia Quality of Life Profile (CDQLP): a factor analysis [abstract]. Qual Life Res 1999; 8: 660

    Google Scholar 

  23. Walker MD, Salek S, Bayer A. The reliability of the Community Dementia Quality of Life Profile (CDQLP) [abstract]. Qual Life Res 2000; 9: 329

    Google Scholar 

  24. Walker MD, Salek S, Bayer A. Assessing patient and carer quality of life (QoL) in dementia: validating the concept of a composite measure [abstract]. Age Ageing 2001; 30 Suppl. 2: 61

    Google Scholar 

  25. Walker MD, Salek S, Bayer A. The relationship between the quality of life (QoL) of dementia patients and their carers: validation of the Community Dementia Quality of Life Profile (CDQLP) [abstract]. Age Ageing 2001; 30 Suppl. 2: 62

    Google Scholar 

  26. Bryan S, Hardyman W, Bentham P, et al. Proxy completion of EQ-5D in patients with dementia. Qual Life Res 2005; 14: 107–18

    Article  PubMed  CAS  Google Scholar 

  27. Brouwer WB, van Exel NJ, Koopmanschap MA, et al. 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

    Article  PubMed  CAS  Google Scholar 

  28. van Exel NJ, Koopmanschap MA, van den Berg B, et al. Burden of informal caregiving for stroke patients: identification of caregivers at risk of adverse health effects. Cerebrovasc Dis 2005; 19: 11–7

    Article  PubMed  Google Scholar 

  29. van den Berg B, Al M, Brouwer W, et al. Economic valuation of informal care: the conjoint measurement method applied to informal caregiving. Soc Sci Med 2005; 61: 1342–55

    Article  PubMed  Google Scholar 

  30. Coucill W, Bryan S, Bentham P, et al. EQ-5D in dementia: an investigation of inter-rater agreement. Med Care 2001; 39: 760–771

    Article  PubMed  CAS  Google Scholar 

  31. Brouwer WBF, van Exel NJA, van de Berg B, et al. Burden of caregiving: evidence of objective burden, subjective burden, and quality of life impacts on informal caregivers of patients with rheumatoid arthritis. Arthritis Rheum 2004; 51: 570–7

    Article  PubMed  Google Scholar 

  32. Marin D, Amaya K, Casciano R, et al. Impact of rivastigmine on costs and on time spent in caregiving for families of patients with Alzheimer’s disease. Int Psychogeriatr 2003; 15: 385–98

    Article  PubMed  Google Scholar 

  33. Schulz R, Beach SR. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA 1999; 282: 2215–9

    Article  PubMed  CAS  Google Scholar 

Download references

Acknowledgements

Simon Dixon conceived the idea for the paper, designed and undertook the analyses and was the leading contributor to the writing of the paper.

Mel Walker co-designed the study that collected the CDQLP data, and contributed to the analysis and writing of the paper.

Sam Salek co-designed the study that collected the CDQLP data, and contributed to the analysis and writing of the paper.

There are no conflicts of interest. The work was unfunded.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Simon Dixon.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Dixon, S., Walker, M. & Salek, S. Incorporating carer effects into economic evaluation. Pharmacoeconomics 24, 43–53 (2006). https://doi.org/10.2165/00019053-200624010-00004

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.2165/00019053-200624010-00004

Keywords

Navigation