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Published in: Health and Quality of Life Outcomes 1/2017

Open Access 01-01-2017 | Research

How useful is the EQ-5D in assessing the impact of caring for people with Alzheimer’s disease?

Authors: Catherine Reed, Annabel Barrett, Jeremie Lebrec, Richard Dodel, Roy W. Jones, Bruno Vellas, Anders Wimo, Josep Maria Argimon, Giuseppe Bruno, Josep Maria Haro

Published in: Health and Quality of Life Outcomes | Issue 1/2017

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Abstract

Background

The impact on informal caregivers of caring for people with Alzheimer's disease (AD) dementia can be substantial, but it remains unclear which measures(s) best assess such impact. Our objective was to use data from the GERAS study to assess the ability of the EuroQol 5-dimension questionnaire (EQ-5D) to measure the impact on caregivers of caring for people with AD dementia and to examine correlations between EQ-5D and caregiver burden.

Methods

GERAS was a prospective, non-interventional cohort study in community-dwelling patients with AD dementia and their informal caregivers. The EQ-5D and Zarit Burden Interview (ZBI) were used to measure health-related quality of life and caregiver burden, respectively. Resource-use data collected included caregiver time spent with the patient on activities of daily living (ADL). Spearman correlations were computed between EQ-5D scores, ZBI scores, and time spent on instrumental ADL (T-IADL) at baseline, 18 months, and for 18-month change scores. T-IADL and ZBI change scores were summarized by EQ-5D domain change category (better/stable/worse).

Results

At baseline, 1495 caregivers had mean EQ-5D index scores of 0.86, 0.85, and 0.82, and ZBI total scores of 24.6, 29.4, and 34.1 for patients with mild, moderate, and moderately severe/severe AD dementia, respectively. Change in T-IADL showed a stronger correlation with change in ZBI (0.12; P < 0.001) than with change in EQ-5D index score (0.02; P = 0.546) although both correlations were very weak. Worsening within EQ-5D domains was associated with increases in ZBI scores, although 68%–90% of caregivers remained stable within each EQ-5D domain. There was no clear pattern for change in T-IADL by change in EQ-5D domain.

Conclusions

EQ-5D may not be the optimum measure of the impact of caring for people with AD dementia due to its focus on physical health. Alternative measures need further investigation.
Literature
1.
go back to reference Sörensen S, Conwell Y. Issues in dementia caregiving: effects on mental and physical health, intervention strategies, and research needs. Am J Geriatr Psychiatry. 2011;19:491–6.CrossRefPubMedPubMedCentral Sörensen S, Conwell Y. Issues in dementia caregiving: effects on mental and physical health, intervention strategies, and research needs. Am J Geriatr Psychiatry. 2011;19:491–6.CrossRefPubMedPubMedCentral
2.
go back to reference Mohamed S, Rosenheck R, Lyketsos CG, Schneider LS. Caregiver burden in Alzheimer disease: cross-sectional and longitudinal patient correlates. Am J Geriatr Psychiatry. 2010;18:917–27.CrossRefPubMedPubMedCentral Mohamed S, Rosenheck R, Lyketsos CG, Schneider LS. Caregiver burden in Alzheimer disease: cross-sectional and longitudinal patient correlates. Am J Geriatr Psychiatry. 2010;18:917–27.CrossRefPubMedPubMedCentral
3.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
4.
go back to reference Hounsome N, Orrell M, Edwards RT. EQ-5D as a quality of life measure in people with dementia and their carers: evidence and key issues. Value Health. 2011;14:390–9.CrossRefPubMed Hounsome N, Orrell M, Edwards RT. EQ-5D as a quality of life measure in people with dementia and their carers: evidence and key issues. Value Health. 2011;14:390–9.CrossRefPubMed
5.
go back to reference Park M, Sung M, Kim SK, Kim S, Lee DY. Multidimensional determinants of family caregiver burden in Alzheimer's disease. Int Psychogeriatr. 2015;27:1355–64.CrossRefPubMed Park M, Sung M, Kim SK, Kim S, Lee DY. Multidimensional determinants of family caregiver burden in Alzheimer's disease. Int Psychogeriatr. 2015;27:1355–64.CrossRefPubMed
6.
go back to reference Haro JM, Kahle-Wrobleski K, Bruno G, et al. Analysis of burden in caregivers of people with Alzheimer’s disease using self-report and supervision hours. J Nutr Health Aging. 2014;18:677–84.CrossRefPubMed Haro JM, Kahle-Wrobleski K, Bruno G, et al. Analysis of burden in caregivers of people with Alzheimer’s disease using self-report and supervision hours. J Nutr Health Aging. 2014;18:677–84.CrossRefPubMed
7.
go back to reference Reed C, Belger M, Dell’Agnello G, et al. Caregiver burden in Alzheimer’s disease: differential associations in adult-child and spousal caregivers in the GERAS observational study. Dement Geriatr Cogn Dis Extra. 2014;4:51–64.CrossRefPubMedPubMedCentral Reed C, Belger M, Dell’Agnello G, et al. Caregiver burden in Alzheimer’s disease: differential associations in adult-child and spousal caregivers in the GERAS observational study. Dement Geriatr Cogn Dis Extra. 2014;4:51–64.CrossRefPubMedPubMedCentral
8.
go back to reference Dixon S, Walker M, Salek S. Incorporating carer effects into economic evaluation. Pharmacoeconomics. 2006;24:43–53.CrossRefPubMed Dixon S, Walker M, Salek S. Incorporating carer effects into economic evaluation. Pharmacoeconomics. 2006;24:43–53.CrossRefPubMed
9.
go back to reference Andrén S, Elmståhl S. The relationship between caregiver burden, caregivers’ perceived health and their sense of coherence in caring for elders with dementia. J Clin Nurs. 2008;17:790–9.CrossRefPubMed Andrén S, Elmståhl S. The relationship between caregiver burden, caregivers’ perceived health and their sense of coherence in caring for elders with dementia. J Clin Nurs. 2008;17:790–9.CrossRefPubMed
10.
go back to reference Lopez-Bastida J, Serrano-Aguilar P, Perestelo-Perez L, Oliva-Moreno J. Social-economic costs and quality of life of Alzheimer disease in the Canary Islands, Spain. Neurology. 2006;67:2186–91.CrossRefPubMed Lopez-Bastida J, Serrano-Aguilar P, Perestelo-Perez L, Oliva-Moreno J. Social-economic costs and quality of life of Alzheimer disease in the Canary Islands, Spain. Neurology. 2006;67:2186–91.CrossRefPubMed
11.
go back to reference Mesterton J, Wimo A, By A, et al. Cross sectional observational study on the societal costs of Alzheimer’s disease. Curr Alzheimer Res. 2010;7:358–67.CrossRefPubMed Mesterton J, Wimo A, By A, et al. Cross sectional observational study on the societal costs of Alzheimer’s disease. Curr Alzheimer Res. 2010;7:358–67.CrossRefPubMed
12.
go back to reference Wimo A, Reed CC, Dodel R, et al. The GERAS study: a prospective observational study of costs and resource use in community dwellers with Alzheimer’s disease in three European countries – study design and baseline findings. J Alzheimers Dis. 2013;36:385–99.PubMed Wimo A, Reed CC, Dodel R, et al. The GERAS study: a prospective observational study of costs and resource use in community dwellers with Alzheimer’s disease in three European countries – study design and baseline findings. J Alzheimers Dis. 2013;36:385–99.PubMed
13.
go back to reference Marshall GA, Amariglio RE, Sperling RA, Rentz DM. Activities of daily living: where do they fit in the diagnosis of Alzheimer’s disease? Neurodegener Dis Manag. 2012;2:483–91.CrossRefPubMedPubMedCentral Marshall GA, Amariglio RE, Sperling RA, Rentz DM. Activities of daily living: where do they fit in the diagnosis of Alzheimer’s disease? Neurodegener Dis Manag. 2012;2:483–91.CrossRefPubMedPubMedCentral
14.
go back to reference Bell CM, Araki SS, Neumann PJ. The association between caregiver burden and caregiver health-related quality of life in Alzheimer disease. Alz Dis Assoc Disord. 2001;15:129–36.CrossRef Bell CM, Araki SS, Neumann PJ. The association between caregiver burden and caregiver health-related quality of life in Alzheimer disease. Alz Dis Assoc Disord. 2001;15:129–36.CrossRef
15.
go back to reference Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20:649–55.CrossRefPubMed Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20:649–55.CrossRefPubMed
16.
go back to reference Bachner YG, O’Rourke N. Reliability generalization of responses by care providers to the Zarit Burden Interview. Aging Ment Health. 2007;11:678–85.CrossRefPubMed Bachner YG, O’Rourke N. Reliability generalization of responses by care providers to the Zarit Burden Interview. Aging Ment Health. 2007;11:678–85.CrossRefPubMed
17.
go back to reference Group EQ. Euro-Qol – a new facility for the measurement of health-related quality of life. Health Policy. 1990;16:199–208.CrossRef Group EQ. Euro-Qol – a new facility for the measurement of health-related quality of life. Health Policy. 1990;16:199–208.CrossRef
18.
go back to reference Szende A, Janssen B, Cabasés J, eds. Self-Reported Population Health: An International Perspective based on EQ-5D. SpringerLink: Springer Netherlands; 2014. Szende A, Janssen B, Cabasés J, eds. Self-Reported Population Health: An International Perspective based on EQ-5D. SpringerLink: Springer Netherlands; 2014.
19.
go back to reference Wimo A, Wetterholm A-L, Mastey V, Winblad B. Evaluation of the healthcare resource utilization and caregiver time in anti-dementia drug trials. In: Wimo A, Jönsson B, Karlsson G, Winblad B, editors. Health Economics of Dementia. London: Wiley; 1998. p. 465–99. Wimo A, Wetterholm A-L, Mastey V, Winblad B. Evaluation of the healthcare resource utilization and caregiver time in anti-dementia drug trials. In: Wimo A, Jönsson B, Karlsson G, Winblad B, editors. Health Economics of Dementia. London: Wiley; 1998. p. 465–99.
20.
go back to reference Wimo A, Nordberg G. Validity and reliability of assessments of time. Comparisons of direct observations and estimates of time by the use of the resource utilization in dementia (RUD)-instrument. Arch Gerontol Geriatr. 2007;44:71–81.CrossRefPubMed Wimo A, Nordberg G. Validity and reliability of assessments of time. Comparisons of direct observations and estimates of time by the use of the resource utilization in dementia (RUD)-instrument. Arch Gerontol Geriatr. 2007;44:71–81.CrossRefPubMed
21.
go back to reference Wimo A, Jonsson L, Zbrozek A. The Resource Utilization in Dementia (RUD) instrument is valid for assessing informal care time in community-living patients with dementia. J Nutr Health Aging. 2010;14:685–90.CrossRefPubMed Wimo A, Jonsson L, Zbrozek A. The Resource Utilization in Dementia (RUD) instrument is valid for assessing informal care time in community-living patients with dementia. J Nutr Health Aging. 2010;14:685–90.CrossRefPubMed
22.
go back to reference Shearer J, Green C, Ritchie CW, Zajicek JP. Health state values for use in the economic evaluation of treatments for Alzheimer’s disease. Drugs Aging. 2012;29:31–43.CrossRefPubMed Shearer J, Green C, Ritchie CW, Zajicek JP. Health state values for use in the economic evaluation of treatments for Alzheimer’s disease. Drugs Aging. 2012;29:31–43.CrossRefPubMed
23.
go back to reference Rowen D, Mulhern B, Banerjee S, et al. Comparison of general population, patient, and carer utility values for dementia health states. Med Decis Making. 2015;35:68–80.CrossRefPubMedPubMedCentral Rowen D, Mulhern B, Banerjee S, et al. Comparison of general population, patient, and carer utility values for dementia health states. Med Decis Making. 2015;35:68–80.CrossRefPubMedPubMedCentral
24.
go back to reference Bleijlevens MH, Stolt M, Stephan A, et al. Changes in caregiver burden and health-related quality of life of informal caregivers of older people with dementia: evidence from the European RightTimePlaceCare prospective cohort study. J Adv Nurs. 2015;71:1378–91.CrossRefPubMed Bleijlevens MH, Stolt M, Stephan A, et al. Changes in caregiver burden and health-related quality of life of informal caregivers of older people with dementia: evidence from the European RightTimePlaceCare prospective cohort study. J Adv Nurs. 2015;71:1378–91.CrossRefPubMed
26.
go back to reference Jones C, Edwards RT, Hounsome B. Health economics research into supporting carers of people with dementia: a systematic review of outcome measures. Health Qual Life Outcomes. 2012;10:142.CrossRefPubMedPubMedCentral Jones C, Edwards RT, Hounsome B. Health economics research into supporting carers of people with dementia: a systematic review of outcome measures. Health Qual Life Outcomes. 2012;10:142.CrossRefPubMedPubMedCentral
27.
go back to reference Hoefman RJ, van Exel J, Brouwer WB. Measuring the impact of caregiving on informal carers: a construct validation study of the CarerQol instrument. Health Qual Life Outcomes. 2013;11:173.CrossRefPubMedPubMedCentral Hoefman RJ, van Exel J, Brouwer WB. Measuring the impact of caregiving on informal carers: a construct validation study of the CarerQol instrument. Health Qual Life Outcomes. 2013;11:173.CrossRefPubMedPubMedCentral
28.
go back to reference Lutomski JE, van Exel NJ, Kempen GI, et al. Validation of the Care-Related Quality of Life Instrument in different study settings: findings from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS). Qual Life Res. 2015;24:1281–93.CrossRefPubMed Lutomski JE, van Exel NJ, Kempen GI, et al. Validation of the Care-Related Quality of Life Instrument in different study settings: findings from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS). Qual Life Res. 2015;24:1281–93.CrossRefPubMed
29.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
30.
go back to reference Al-Janabi H, Flynn TN, Coast J. Estimation of a preference-based carer experience scale. Med Decis Making. 2011;31:458–68.CrossRefPubMed Al-Janabi H, Flynn TN, Coast J. Estimation of a preference-based carer experience scale. Med Decis Making. 2011;31:458–68.CrossRefPubMed
31.
go back to reference Dauphinot V, Delphin-Combe F, Mouchoux C, Dorey A, Bathsavanis A, Makaroff Z, Rouch I, Krolak-Salmon P. Risk factors of caregiver burden among patients with Alzheimer's disease or related disorders: a cross-sectional study. J Alzheimers Dis. 2015;44:907–16.PubMed Dauphinot V, Delphin-Combe F, Mouchoux C, Dorey A, Bathsavanis A, Makaroff Z, Rouch I, Krolak-Salmon P. Risk factors of caregiver burden among patients with Alzheimer's disease or related disorders: a cross-sectional study. J Alzheimers Dis. 2015;44:907–16.PubMed
32.
go back to reference Feast A, Moniz-Cook E, Stoner C, Charlesworth G, Orrell M. A systematic review of the relationship between behavioral and psychological symptoms (BPSD) and caregiver well-being. Int Psychogeriatr. 2016;27:1–14. Feast A, Moniz-Cook E, Stoner C, Charlesworth G, Orrell M. A systematic review of the relationship between behavioral and psychological symptoms (BPSD) and caregiver well-being. Int Psychogeriatr. 2016;27:1–14.
33.
go back to reference Gaugler JE, Roth DL, Haley WE, Mittelman MS. Can counseling and support reduce burden and depressive symptoms in caregivers of people with Alzheimer’s disease during the transition to institutionalization? Results from the New York University caregiver intervention study. J Am Geriatr Soc. 2008;56:421–8.CrossRefPubMedPubMedCentral Gaugler JE, Roth DL, Haley WE, Mittelman MS. Can counseling and support reduce burden and depressive symptoms in caregivers of people with Alzheimer’s disease during the transition to institutionalization? Results from the New York University caregiver intervention study. J Am Geriatr Soc. 2008;56:421–8.CrossRefPubMedPubMedCentral
34.
go back to reference Schultz R, Belle SH, Czaja SJ, McGinnis KA, Stevens A, Zhang S. Long-term care placement of dementia patients and caregiver health and well-being. JAMA. 2004;292:961–7.CrossRef Schultz R, Belle SH, Czaja SJ, McGinnis KA, Stevens A, Zhang S. Long-term care placement of dementia patients and caregiver health and well-being. JAMA. 2004;292:961–7.CrossRef
Metadata
Title
How useful is the EQ-5D in assessing the impact of caring for people with Alzheimer’s disease?
Authors
Catherine Reed
Annabel Barrett
Jeremie Lebrec
Richard Dodel
Roy W. Jones
Bruno Vellas
Anders Wimo
Josep Maria Argimon
Giuseppe Bruno
Josep Maria Haro
Publication date
01-01-2017
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2017
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/s12955-017-0591-2

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