Pharmacoeconomics 2006; 24 (1): 39-41COMMENTARY 1170-7690/06/0001-0039/$39.95/0

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Too Important to IgnoreInformal Caregivers and Other Significant Others

Werner B.F. Brouwer

Department of Health Policy and Management & Institute for Medical Technology Assessment,Erasmus University, Rotterdam, The Netherlands

Some 10 years ago now, the US Panel on Cost- Yet, 10 years later, health economists have still tobegin to systematically study the health effects inEffectiveness in Health and Medicine publishedsignificant others. Relatively little attention has beentheir influential guidelines for economic evalua-paid to the health effects in significant others andtions.[1] The book in which these guidelines are laideven fewer attempts have been made to considerdown starts with an impressive account of the wel-how such effects can be incorporated meaningfullyfare economic roots of economic evaluation. Basedin economic evaluations.on these roots, it is argued that economic evaluations

However, one particular group of significantshould normally take a societal perspective. Thisothers is recently gaining more attention: informalimplies that all costs and effects should be includedcarers. It is clear that this is an important and specif-in an analysis, regardless of who experiences them.ic group. The care provided by family members andIn line with this perspective, the US Panel makes anfriends of a care recipient is an important part ofimportant statement when it encourages analysts “tototal care, especially in the context of the chronicallythink broadly about the people affected by the inter-ill. For instance, in The Netherlands, some 1.6 mil-vention and begin to include health-related quality-lion people a year provide care to someone in theirof-life effects of significant others in sensitivitysocial environment, often intensively and for longanalyses when they are important.”[1] The Panel thusperiods of time.[4] These informal carers thus pro-indicates that healthcare interventions may affectvide direct input in the treatment and care for aothers besides patients and that these ‘significantpatient and may be a complement to, as well as aothers’ should therefore be considered in an analysissubstitute for, formal care. A recent US study showswhenever relevant and important. An important andthat informal care reduces home healthcare use andlaudable recommendation.delays nursing home entry.[5] That in itself is already

Moreover, this recommendation is compatible a good reason for health economists and policynot only with a societal perspective, but also with a makers to be interested in informal carers and to benarrower healthcare perspective, which many na- concerned with their position. But, more importanttional guidelines for pharmacoeconomic evaluations in this context is the fact that, although informal carestill take (see the International Society for may be the preferred option for both the patient andPharmacoeconomics and Outcomes Research[2] for the carer (as long as it is manageable)[6] the impacta good overview). Within such a perspective, health- of informal care on the carer can be substantial. It iscare decision makers are assumed to be concerned not uncommon for the provision of informal care towith maximising health with the resources available require many hours per week of effort and devotion,to them, which does not exclude health effects in leading to a substantial perceived burden, socialsignificant others (e.g. the National Institute for isolation, work loss and mental and physical healthHealth and Clinical Excellence[3]). problems (e.g. van Exel et al.,[7] Nijboer et al.[8] and

40 Brouwer

Lucke et al.[9]). Moreover, it has been demonstrated in one’s social environment is ill.[14] Given the factthat caregiving can be an independent mortality risk that both carer burden and family well-being isin elderly carers.[10] These (health) effects in carers likely to be affected by the patient’s quality of life,need to be studied more closely and it needs to be separating them requires comparing two groups ofestablished how these can be assessed and incorpo- family members, one acting as carers and the otherrated in the context of an economic evaluation. not. Both may experience the family effect, while

only one additionally experiences the carer effect.In this issue, following the call of the US Panel,By separating these two effects, a good estimation ofDixon et al.[11] present some interesting findings incarer impact in terms of health effects can be made.this area. Although their dataset is somewhat limitedFor instance, a recent study[15] showed that mothers– partly in numbers, mostly in explanatory variablesof children with leukaemia (caring for these chil-included (e.g. care tasks, time assessment, back-dren) had lower health-related quality of life thanground characteristics of patients and carers) as thesimilar mothers of children without leukaemia. Thisauthors themselves stress – their results highlight thestudy highlights the possible importance of the fami-influence of patient quality of life on caregiver ac-ly effect per se, as it demonstrates that, in particular,tivities and possibly on carer quality of life. Thethe health-related quality of life of mothers of hos-latter relationship between patient and carer qualitypitalised children is low, more so than that ofof life is probably more complex. For instance,mothers of children with regular care and home care.Brouwer et al.[12] found that, in carers of rheumatoidHowever, one would expect the caregiving activitiesarthritis patients, although caregivers on averageto be relatively few in the case of hospitalisation,appeared to be relatively healthy,1 carers for morewhereas the family effect may be expected to beseverely ill patients scored relatively low in terms ofstrong – given the poor condition of these children.health. It is clear that this relationship needs moreSeparating these effects is important in order toinvestigation, preferably in longitudinal studies, asdraw the right conclusions on the impact of illnessDixon et al.[11] note. Still, they rightfully indicateon others per se and the impact of caregiving.that economists and policy makers need to be aware

that these health effects are currently largely ig- That is not to say that the inclusion of thesenored. Although the importance of these effects will family effects is inappropriate. In fact, few thingsdiffer per disease area and intervention studied, this may impact well-being (and health) as much asis an important point. Studies such as that of Dixon serious illness of a loved one – and a convincinget al.[11] increase this awareness and may stimulate case can be made for the inclusion of this impact.more research in this area. My main point is rather that it seems inappropriate

While many things can be said about the reasons and potentially misleading to only incorporate thiswhy informal care is currently largely ignored in effect when the affected individuals are also carers,economic evaluation, which probably has to do with since this may bias results for some illnesses andthe perspective of many studies and the fact that populations. As the US Panel suggested, we need tovalid and easily applicable methods to incorporate think more broadly about the incorporation of suchthe full effects of informal care are currently lack- effects, and family effects would be an importanting,[13] I would like to stress here the importance of and relevant aspect here. I would suspect such ef-broader consideration of significant others. Indeed, fects to be most pronounced in families of the se-as Dixon et al.[11] note, previously we have argued verely ill, perhaps more with young patients thanthat it may be difficult to separate carer effects from with older patients. If so, the inclusion of suchso-called ‘family effects’ – the effect on quality of effects will give more weight to treatment of thoselife or well-being from the ‘mere fact’ that someone groups.

1 Which can be compared with the healthy worker effect – one is less likely to become a caregiver if one’s own healthis poor.

© 2006 Adis Data Information BV. All rights reserved. Pharmacoeconomics 2006; 24 (1)

Informal Caregivers: Too Important to Ignore 41

5. Van Houtven CH, Norton EC. Informal care and health care useI have concentrated here on the health effects inof older adults. J Health Econ 2004; 23 (6): 1159-80

significant others. It needs noting that one could6. Brouwer WBF, van Exel NJA, van den Berg B, et al. Processargue that broader effects on well-being of signifi-

utility from providing informal care: the benefit of caring.cant others are also relevant (which is also true for Health Policy 2005; 74 (1): 85-99

patients for that matter). In some interventions (for 7. van Exel NJA, Koopmanschap MA, van den Berg B, et al.Burden of informal caregiving for stroke patients: identifica-instance in vitro fertilisation) the position of, andtion of caregivers ‘at risk’. Cerebrovasc Dis 2005; 19: 11-7impact on, specific significant others (such as poten-

8. Nijboer C, Triemstra M, Tempelaar R, et al. Determinants oftial fathers) seems especially important and shouldcaregiving experiences and mental health of partners of cancerbe explored further.patients. Cancer 1999; 86 (4): 577-88

Therefore, 10 years after the US Panel recom- 9. Lucke KT, Coccia H, Goode JS, et al. Quality of life in spinalmended we think broadly about the incorporation of cord injured individuals and their carers during the initial 6

months following rehabilitation. Qual Life Res 2004; 13: 97-effects on significant others – and I would not re-110strict these to health effects only – this call is as

10. Schulz R, Beach SR. Caregiving as a risk factor for mortality:relevant as ever.the caregiver health effects study. JAMA 1999; 282 (23):

Let us hope that 10 years from now the consider- 2215-9

ation of significant others in economic evaluations 11. Dixon S, Walker M, Salek S. Incorporating carer effects intoeconomic evaluation. Pharmacoeconomics 2006; 24 (1): 43-53has improved significantly!

12. Brouwer WBF, van Exel NJA, van de Berg B, et al. The burdenof caregiving: evidence on objective burden, subjective burdenand quality of life impacts in informal caregivers for patientsAcknowledgementswith rheumatoid arthritis. Arthritis Care Res 2004; 51 (4): 570-7

13. van den Berg B, Brouwer WBF, Koopmanschap MA. EconomicNo sources of funding were used to assist in the prepara-evaluation of informal care: an overview of methods andtion of this article. The author has no conflicts of interest thatapplications. Eur J Health Econ 2004; 5 (1): 36-45are directly relevant to the content of this article.

14. Brouwer WBF, van Exel NJA, Koopmanschap MA, et al. Thevaluation of informal care in economic appraisal: a considera-tion of individual choice and societal costs of time. Int JTechnol Assess Health Care 1999; 15: 147-60References

1. Gold MR, Siegel JE, Russell LB, et al., editors. Cost effective- 15. Yamazaki S, Sokejima S, Mizoue T, et al. Health-related qualityness in health and medicine. Oxford: Oxford University Press, of life of mothers of children with leukemia in Japan. Qual Life1996: 67 Res 2005; 14 (4): 1079-85

2. International Society for Pharmacoeconomics and OutcomesResearch. Pharmacoeconomic guidelines around the world[online]. Available from URL: http://www.ispor.org/PEguide

Correspondence and offprints: Dr Werner B.F. Brouwer, De-lines/index.asp [Accessed 2005 Nov 25]partment of Health Policy and Management, Erasmus MC,3. National Institute for Health and Clinical Excellence. Guide toRoom L4-121, PO Box 1738, 3000 DR, Rotterdam, Thethe methods of technology appraisal. London: NICE, 2004Netherlands.4. De Boer A, editor. View on informal care. The Hague: SocialE-mail: brouwer@bmg.eur.nland Cultural Planning Bureau, 2005

© 2006 Adis Data Information BV. All rights reserved. Pharmacoeconomics 2006; 24 (1)