Abstract
The societal perspective in economic evaluations dictates that costs and effects of informal care are included in the analyses. However, this incorporation depends on practically applicable, reliable and valid methods to register the impact of informal care. This paper presents the conceptualisation and a first test of the CarerQol instrument, aimed at measuring care-related quality of life in informal caregivers. The instrument combines the information density of a burden instrument (encompassing seven important burden dimensions) with a valuation component (a VAS scale for happiness). The instrument was tested in a Dutch sample of heterogeneous caregivers (n = 175) approached through regional caregiver support centres. This first test describes the feasibility as well as convergent and clinical validity of the CarerQol instrument. The seven burden dimensions related well with differences in VAS scores. In all instances, the average CarerQol-VAS scores decreased as the severity of problems increased. Multivariate analyses showed that the seven burden dimensions explained 37–43% of the variation in CarerQol-VAS scores, depending on the model used. The CarerQol seems a promising new instrument to register the impact of informal caregivers in economic evaluations.
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References
M Hirst (2005) ArticleTitleCarer distress: A prospective, population-based study Soc Sci Med 61 IssueID3 697–708 Occurrence Handle15899327 Occurrence Handle10.1016/j.socscimed.2005.01.001
NJA Exel ParticleVan GAM Bos Particlevan den B Berg Particlevan den MA Koopmanschap WBF Brouwer (2004b) ArticleTitleWhat really matters: an inquiry into the relative importance of dimensions of care giving burden Clin Rehabil 18 IssueID6 683–693 Occurrence Handle10.1191/0269215504cr743oa
WBF Brouwer NJA Exel Particlevan B Berg Particlevan den HJ Dinant MA Koopmanschap GAM Bos Particlevan den (2004) ArticleTitleThe burden of care giving: Evidence on objective burden, subjective burden and quality of life impacts in informal caregivers for patients with Rheumatoid Arthritis Arthritis Care Res 51 IssueID4 570–577 Occurrence Handle10.1002/art.20528
CW Given B Given M Stommel C Collins S King S Franklin (1992) ArticleTitleThe caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairment Res Nursing Health 15 271–283 Occurrence Handle1:STN:280:By2A2Mjps1A%3D
RJV Montgomery JG Goneya NR Hooyman (1985) ArticleTitleCare giving and the experience of subjective and objective burden Family Relations 34 19–26 Occurrence Handle10.2307/583753
NJA Exel ParticleVan MA Koopmanschap B Berg Particlevan den WBF Brouwer GAM Bos Particlevan den (2005) ArticleTitleBurden of informal care giving for stroke patients: identification of caregivers at risk of adverse health effects Cerebrovasc Dis 19 IssueID1 11–17 Occurrence Handle15528879 Occurrence Handle10.1159/000081906
R Schulz SR Beach (1999) ArticleTitleCare giving as a risk factor for mortality: The caregiver health effects study JAMA 282 IssueID23 2215–2219 Occurrence Handle10605972 Occurrence Handle1:STN:280:DC%2BD3c%2FntF2rug%3D%3D Occurrence Handle10.1001/jama.282.23.2215
MR Gold JE Siegel LB Russell MC Weinstein (Eds) (1996) Cost-Effectiveness in Health and Medicine Oxford University Press Oxford
WBF Brouwer FFH Rutten MA Koopmanschap (2001) Costing in economic evaluations MF Drummond A McGuire (Eds) Economic Evaluation in Health Care: Merging Theory with Practice Oxford University Press New York
WBF Brouwer NJA Exel Particlevan MA Koopmanschap FFH Rutten (1999) ArticleTitleThe valuation of informal care in Economic Appraisal; a consideration of individual choice and societal costs of time Int J Technol Assess in Health Care 15 147–160 Occurrence Handle1:STN:280:DyaK1MzjsF2itQ%3D%3D Occurrence Handle10.1017/S0266462399152346
B Berg ParticleVan den WBF Brouwer MA Koopmanschap (2004) ArticleTitleEconomic evaluation of informal care: An overview of methods and applications Eur J Health Econ 5 IssueID1 36–45 Occurrence Handle15452763 Occurrence Handle10.1007/s10198-003-0189-y
E Sales (2003) ArticleTitleFamily burden and quality of life Qual Life Res 12 IssueIDSuppl 1 33–41 Occurrence Handle12803309 Occurrence Handle10.1023/A:1023513218433
S Yamazaki S Sokejima T Mizoue A Eboshida S Fikuhara (2005) ArticleTitleHealth related quality of life of mothers of children with leukaemia in Japan Qual Life Res 14 1079–1085 Occurrence Handle16041903 Occurrence Handle10.1007/s11136-004-3288-z
GJ Hankey (2004) ArticleTitleInformal care giving for disabled stroke survivors BMJ 328 IssueID7448 1085–1086 Occurrence Handle15130955 Occurrence Handle10.1136/bmj.328.7448.1085
B Berg ParticleVan den WBF Brouwer NJA Exel Particlevan MA Koopmanschap (2005a) ArticleTitleValuation of informal care: The contingent valuation method applied in informal caregiving Health Econ 14 IssueID2 169–183 Occurrence Handle10.1002/hec.893
B Berg ParticleVan den MJ Al WBF Brouwer NJA Exel Particlevan MA Koopmanschap (2005b) ArticleTitleEconomic valuation of informal care: The conjoint measurement method applied in informal caregiving Soc Sci Med 61 IssueID6 1342–1355 Occurrence Handle10.1016/j.socscimed.2005.01.029
MA Koopmanschap NJA Exel Particlevan GAM Bos Particlevan den B Berg Particlevan den WBF Brouwer (2004) ArticleTitleThe desire for support and respite care; preferences of Dutch informal caregivers Health Policy 68 309–320 Occurrence Handle15113642 Occurrence Handle1:STN:280:DC%2BD2c3hsF2ltw%3D%3D Occurrence Handle10.1016/j.healthpol.2003.10.002
BC Robinson (1983) ArticleTitleValidation of a Caregiver Strain Index J Gerontol 38 IssueID3 344–348 Occurrence Handle6841931 Occurrence Handle1:STN:280:BiyC1cjks1Y%3D
MJFJ Vernooij-Dassen JMG Persoon AJA Felling (1996) ArticleTitlePredictors of sense of competence in caregivers of demented persons Soc Sci Med 43 41–49 Occurrence Handle8816009 Occurrence Handle1:STN:280:BymH3M3ms1Q%3D Occurrence Handle10.1016/0277-9536(95)00332-0
NJA Exel ParticleVan WJM Scholteop Reimer WBF Brouwer B Berg Particlevan den MA Koopmanschap GAM Bos Particlevan den (2004a) ArticleTitleInstruments for assessing the burden of informal care giving for stroke patients in clinical practice: a comparison of CSI, CRA, SCQ and self-rated burden Clin Rehabil 18 IssueID2 203–214 Occurrence Handle10.1191/0269215504cr723oa
E McIntosh C Donaldson M Ryan (1999) ArticleTitleRecent advances in the methods of cost-benefit analysis in healthcare. Matching the art to the science Pharmacoeconomics 15 IssueID4 357–367 Occurrence Handle10537954 Occurrence Handle1:STN:280:DyaK1Mzgs1Wmuw%3D%3D Occurrence Handle10.2165/00019053-199915040-00003
WBF Brouwer MA Koopmanschap (2000) ArticleTitleOn the Economic Foundations of CEA. Gentlemen (m/f), take your positions! J Health Econ 19 439–459 Occurrence Handle11010234 Occurrence Handle1:STN:280:DC%2BD3M%2FgsF2qtQ%3D%3D Occurrence Handle10.1016/S0167-6296(99)00038-7
InstitutionalAuthorNameEuroQol Group (1990) ArticleTitleEuroQol – a new facility for the measurement of health related quality of life Health Policy 16 199–208 Occurrence Handle10.1016/0168-8510(90)90421-9
P Dolan (1997) ArticleTitleModeling valuations for EuroQol health states Med Care 35 IssueID11 1095–1108 Occurrence Handle9366889 Occurrence Handle1:STN:280:DyaK1c%2FjtlKrtg%3D%3D Occurrence Handle10.1097/00005650-199711000-00002
MP Lawton MH Kleban M Moss M Rovine A Glicksman (1989) ArticleTitleMeasuring caregiving appraisal J Gerontol 44 61–71
M Novak C Guest (1989) ArticleTitleApplication of a multidimensional Caregiver Burden Inventory Gerontologist 29 IssueID6 798–803 Occurrence Handle2516000 Occurrence Handle1:STN:280:By%2BC2M3jvFM%3D
JM Kinney MAP Stephens (1989) ArticleTitleCaregiver Hassles Scale: assessing the daily hassles of caring for a family member with dementia Gerontologist 29 IssueID3 332
JI Kosberg RE Cairl (1986) ArticleTitleThe Cost of Care Index: a case management tool for screening informal care providers Gerontologist 26 IssueID3 273–278 Occurrence Handle3087822 Occurrence Handle1:STN:280:BimB2cfnsVE%3D
SH Zarit KE Reever J Bach-Peterson (1980) ArticleTitleRelatives of the impaired elderly: correlates of feelings of burden Gerontologist 20 649–655 Occurrence Handle7203086 Occurrence Handle1:STN:280:Bi6C3sbnt1E%3D
R Veenhoven (1984) Conditions of Happiness Kluwer academic Dordrecht Netherlands
AW Musschenga (1997) ArticleTitleThe relation between concepts of quality-of-life, health and happiness J Med Philos 22 IssueID1 11–28 Occurrence Handle9095459 Occurrence Handle1:STN:280:ByiB2cblslc%3D
WBF Brouwer NJA Exel Particlevan B Berg Particlevan den GAM Bos Particlevan den MA Koopmanschap (2005) ArticleTitleProcess utility from providing informal care: The benefit of caring Health Policy 74 IssueID1 85–99 Occurrence Handle16098415 Occurrence Handle10.1016/j.healthpol.2004.12.008
Easterlin RA. Does economic growth improve the human lot? Some experimental evidence, In: David PA, Reder MW (eds.), Nations and Households in Economic Growth – Essays in Honor of Moses Abramovitz, Academic Press, 1974.
RA Easterlin (1995) ArticleTitleWill raising the incomes of all increase the happiness of all? J Econ Behav Org 27 35–47 Occurrence Handle10.1016/0167-2681(95)00003-B
B Frey A Stutzer (2002) ArticleTitleWhat Can Economists Learn from Happiness Research? J Econ Lit 40 402–435 Occurrence Handle10.1257/002205102320161320
A Ferrer-i-Carbonell BM Praag Particlevan (2002) ArticleTitleThe subjective costs of health losses due to chronic diseases. An alternative model for monetary appraisal Health Econ 11 IssueID8 709–722 Occurrence Handle12457371 Occurrence Handle10.1002/hec.696
GW Torrance D Feeny W Furlong (2001) ArticleTitleVisual Analogue Scales: Do They Have a Role in the Measurement of Preferences for Health States? Med Dec Making 21 329–334 Occurrence Handle1:STN:280:DC%2BD38%2FisFyktA%3D%3D Occurrence Handle10.1177/02729890122062622
Van den Berg B, Ferrer-i-Carbonell A. The well-being of informal caregivers: A monetary valuation of informal care. Working paper, University of Amsterdam, 2004.
CD Mathers CJ Murray M Ezzati E Gakidou JA Salomon C Stein (2003) ArticleTitlePopulation health metrics: crucial inputs to the development of evidence for health policy Popul Health Metr 1 IssueID1 6 Occurrence Handle12773210 Occurrence Handle10.1186/1478-7954-1-6
Ferrer-i-Carbonell MA, Frijters P. How important is methodology for the estimates of the determinants of happiness? Econ J, 2004; 114(july):641–659.
Van den Berg B, Pauwen P. Measurement of informal care: An empirical study into the reliable measurement of time spent on informal care giving. Health Economics, in press.
C Brugge H Alexander S Hagen (1999) ArticleTitleStroke patients’ informal caregivers: Patient, caregiver, and service factors that affect caregiver strain Stroke 20 1517–1523
Van Exel NJA, Van den Berg B, Van den Bos GAM, Koopmanschap MA, Brouwer WBF. Informal care in the Netherlands: A situational sketch of informal care-providers reached by Informal Care Centres. iMTA report 02.58b. Rotterdam: Erasmus MC. 2002. Available from: http://www.bmg.eur.nl/imta/reports.
Van Exel NJA, Moree M, Koopmanschap MA, Schreuder-Goedheit T, Brouwer WBF. Respite care. n explorative study of demand and use in Dutch informal caregivers. Submitted paper.
Van den Berg B, Brouwer WBF, van Exel NJA, Koopmanschap MA, van den Bos GAM, Rutten FFH. The opportunity cost method and the proxy good method applied in informal caregivers. Soc Sci & Med, in press.
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Brouwer, W.B.F., van Exel, N.J.A., van Gorp, B. et al. The CarerQol instrument: A new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Qual Life Res 15, 1005–1021 (2006). https://doi.org/10.1007/s11136-005-5994-6
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DOI: https://doi.org/10.1007/s11136-005-5994-6