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Health and Quality of Life Outcomes
Published in: Health and Quality of Life Outcomes 1/2012

Open Access 01-12-2012 | Review

Health economics research into supporting carers of people with dementia: A systematic review of outcome measures

Authors: Carys Jones, Rhiannon Tudor Edwards, Barry Hounsome

Published in: Health and Quality of Life Outcomes | Issue 1/2012

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Abstract

Advisory bodies, such as the National Institute for Health and Clinical Excellence (NICE) in the UK, advocate using preference based instruments to measure the quality of life (QoL) component of the quality-adjusted life year (QALY). Cost per QALY is used to determine cost-effectiveness, and hence funding, of interventions. QALYs allow policy makers to compare the effects of different interventions across different patient groups. Generic measures may not be sensitive enough to fully capture the QoL effects for certain populations, such as carers, so there is a need to consider additional outcome measures, which are preference based where possible to enable cost-effectiveness analysis to be undertaken. This paper reviews outcome measures commonly used in health services research and health economics research involving carers of people with dementia. An electronic database search was conducted in PubMed, Medline, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, the National Health Service Economic Evaluation Database (NHS EED), Database of Abstracts of Reviews of Effects (DARE) and Health Technology Assessment database. Studies were eligible for inclusion if they included an outcome measure for carers of people with dementia. 2262 articles were identified. 455 articles describing 361 studies remained after exclusion criteria were applied. 228 outcome measures were extracted from the studies. Measures were categorised into 44 burden measures, 43 mastery measures, 61 mood measures, 32 QoL measures, 27 social support and relationships measures and 21 staff competency and morale measures. The choice of instrument has implications on funding decisions; therefore, researchers need to choose appropriate instruments for the population being measured and the type of intervention undertaken. If an instrument is not sensitive enough to detect changes in certain populations, the effect of an intervention may be underestimated, and hence interventions which may appear to be beneficial to participants are not deemed cost-effective and are not funded. If this is the case, it is essential that additional outcome measures which detect changes in broader QoL are included, whilst still retaining preference based utility measures such as EQ-5D to allow QALY calculation for comparability with other interventions.
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Literature
1.
Department of Health: Equity and excellence: Liberating the NHS. London: Department of Health; 2010.
2.
National Institute for Health and Clinical Excellence: Guide to the methods of technology appraisal. London: National Institute for Health and Clinical Excellence; 2008.
3.
Luengo-Fernandez R, Leal J, Gray A: Dementia 2010. The economic burden of dementia and associated research funding in the United Kingdom. Cambridge: Alzheimer's Research Trust; 2010.
4.
Elmstahl S, Ingvad B, Annerstedt L: Family caregiving in dementia: prediction of caregiver burden 12 months after relocation to group-living care. Int Psychogeriatr 1998, 10(2):127–146. 10.1017/S1041610298005249CrossRefPubMed
5.
O’Donnell BF, Drachman DA, Barnes HJ, Peterson KE, Swearer JM, Lew RA: Incontinence and Troublesome Behaviors Predict Institutionalization in Dementia. J Geriatr Psychiatry Neurol 1992, 5(1):45–52.CrossRefPubMed
6.
Bell CM, Araki SS, Neumann PJ: The association between caregiver burden and caregiver health-related quality of life in Alzheimer disease. Alzheimers Dis and Assoc Disord 2001, 15(3):129–136. 10.1097/00002093-200107000-00004CrossRef
7.
Kelly M, McDaid D, Ludbrook A, Powell J: Economic appraisal of public health interventions. London: NHS Health Development Agency; 2005.
8.
Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M: Developing and evaluating complex interventions: new guidance. London: Medical Research Council; 2008.
9.
Payne K, McAllister M, Davies LM: Valuing the economic benefits of complex interventions: when maximising health is not sufficient. Health Econ 2012. in press 10.1002/hec.2795
10.
Moniz-Cook E, Vernooij-Dassen M, Woods R, Verhey F, Chattat R, De Vugt M, Mountain G, O’Connell M, Harrison J, Vasse E, Droes RM, Orrell M, Interdem Group: A European consensus on outcome measures for psychosocial intervention research in dementia care. Aging Ment Health 2008, 12(1):14–29. 10.1080/13607860801919850CrossRefPubMed
11.
Al-Janabi H, Flynn T, Coast J: QALYs and carers. PharmacoEconomics 2011, 29(12):1015–1023. 10.2165/11593940-000000000-00000CrossRefPubMed
12.
Liberati A, Altman DG, Tetzlaff J, Mulrow C, Gøtzsche P, Ioannidis JPA, Clarke M, Devereaux PJ, Kleijnen J, Moher D: The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate healthcare interventions: explanation and elaboration. Br Med J 2009., 339(b2700): 10.1136/bmj.b2700
13.
Zarit S, Reever K, Bach-Peterson J: Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist 1980, 20(6):649–655. 10.1093/geront/20.6.649CrossRefPubMed
14.
Bedard M, Molloy D, Squire L, Dubois S, Lever J, O'Donnell M: The Zarit Burden Interview: A New Short Version and Screening version. Gerontologist 2001, 41(5):652–657. 10.1093/geront/41.5.652CrossRefPubMed
15.
Teri L, Truax P, Logsdon R, Uomoto J, Zarit S, Vitaliano P: Assessment of Behavioral Problems in Dementia: The Revised Memory and Behavior Problems Checklist (RMBPC). Psychol Aging 1992, 7(4):622–631.CrossRefPubMed
16.
Zarit S, Orr N, Zarit J The hidden victims of Alzheimer’s disease: Families under stress. In Understanding the stress of caregivers: planning an intervention. New York: New York University Press; 1985.
17.
Vernooij-Dassen M, Persoon J, Felling A: Predictors of sense of competence in caregivers of demented persons. Soc Sci Med 1996, 43: 41–49. 10.1016/0277-9536(95)00332-0CrossRefPubMed
18.
Radloff L: The CES-D scale: A self-report depression scale for research in the general population. Appl Psychol Meas 1977, 1(3):385–401. 10.1177/014662167700100306CrossRef
19.
Goldberg D: Manual of the General Health Questionnaire. Windsor, England: NFER Publishing; 1978.
20.
Kaufer DI, Cummings JL, Christine D, Bray T, Castellon S, Masterman D, MacMillan A, Ketchel P, Dekosky ST: Assessing the impact of neuropsychiatric symptoms in Alzheimer’s disease: the Neuropsychiatric Inventory Caregiver Distress Scale. J Am Geriatr Soc 1998, 46: 210–215.CrossRefPubMed
21.
Yesavage J, Brink T, Rose T, Lum O, Huang V, Adey M, Leirer VO: Development and validation of a geriatric depression screening scale: a preliminary report. J Psychiatr Res 1982, 17(1):37–49. 10.1016/0022-3956(82)90033-4CrossRefPubMed
22.
Beck A, Ward C, Mendelson M, Mock J, Erbaugh J: An Inventory For Measuring Depression. Arch Gen Psychiatry 1961, 4: 53–63.CrossRef
23.
Kaufer DI, Cummings JL, Ketchel P, Smith V, MacMillan A, Shelley T, Lopez OL, DeKosky ST: Validation of the NPI-Q, a Brief Clinical Form of the Neuropsychiatric Inventory. J Neuropsychiatry Clin Neurosci 2000, 12(2):233–239. 10.1176/appi.neuropsych.12.2.233CrossRefPubMed
24.
Ware J, Sherbourne C: The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Medical Care 1992, 30(6):473–483. 10.1097/00005650-199206000-00002CrossRefPubMed
25.
EuroQoL Group: EuroQoL- a new facility for the measurement of health-related quality of life. Health Policy 1990, 16: 199–208.CrossRef
26.
World Health Organisation: WHOQOL-BREF Introduction, administration, scoring, and generic version of the instrument. Geneva: World Health Organization; 1996.
27.
Furlong W, Feeny D, Torrance G, Barr R: The Health Utilities Index (HUI) System for Assessing Health-Related Quality of Life in Clinical Studies. Ann Med 2001, 33(5):375–384. 10.3109/07853890109002092CrossRefPubMed
28.
Brazier J, Usherwood T, Harper R, Thomas K: Deriving a preference-based single index from the UK SF-36 Health Survey. J Clin Epidemiol 1998, 51(11):1115–1128. 10.1016/S0895-4356(98)00103-6CrossRefPubMed
29.
Brazier J, Roberts J, Deverill M: The estimation of a preference-based measure of health from the SF-36. J Health Econ 2002, 21(2):271–292. 10.1016/S0167-6296(01)00130-8CrossRefPubMed
30.
Sarason I, Levine H, Basham R, Sarason B: Assessing Social Support: The Social Support Questionnaire. J Pers Soc Psychol 1983, 44(1):127–139.CrossRef
31.
Stokes J: Predicting Satisfaction with Social Support from Social Network Structure. Am J Community Psychol 1983, 11(2):141–152. 10.1007/BF00894363CrossRef
32.
Maslach C, Jackson S: The measurement of experienced burnout. J Organ Behav 1981, 2(2):99–113. 10.1002/job.4030020205CrossRef
33.
Lintern T, Woods B, Phair L: Before and after training: a case study of intervention. J of Dement Care 2000, 8(1):15–17.
34.
Drummond MO: Methods for the Economic Evaluation of Health Care Programmes. Oxford: Oxford University Press; 2005.
35.
Charlesworth G, Shepstone L, Wilson E, Thalanany M, Mugford M, Poland F: Does befriending by trained lay workers improve psychological well-being and quality of life for carers of people with dementia, and at what cost? A randomised controlled trial. Health Technol Assess 2008, 12: 4. NHS R&D HTA ProgrammeCrossRef
36.
Brazier J, Ratcliffe J, Salomon A, Tsuchiya A: Measuring benefit and valuing health benefits for economic evaluation. Oxford: Oxford University Press; 2007.
37.
Grieve R, Grishchenko M, Carins J: SF-6D versus EQ-5D: reasons for differences in utility scores and impact on reported cost-utility. Eur J Health Econ 2009, 10: 15–23. 10.1007/s10198-008-0097-2CrossRefPubMed
38.
39.
40.
Neumann P, Kuntz K, Leon J, Araki S, Hermann R, Hsu M-A, et al.: Health utilities in Alzheimer’s disease: a cross-sectional study of patients and caregivers. Medical Care 1999, 37(1):27–32. 10.1097/00005650-199901000-00005CrossRefPubMed
41.
Pickard A, Yang Y, Lee T: Comparison of health-related quality of life measures in chronic obstructive pulmonary disease. Health Qual Life Outcomes 2011, 9(1):26. 10.1186/1477-7525-9-26PubMedCentralCrossRefPubMed
42.
Neumann PJ, Hermann RC, Kuntz KM, Araki SS, Duff SB, Leon J, Berenbaum PA, Goldman PA, Williams LW, Weinstein MC: Cost-effectiveness of donepezil in the treatment of mild or moderate Alzheimer's disease. Neurology 1999, 52(6):1138–1145. 10.1212/WNL.52.6.1138CrossRefPubMed
43.
Drummond MF, Mohide EA, Tew M, Streiner DL, Pringle DM, Gilbert JR: Economic evaluation of a support program for caregivers of demented elderly. Int J Technol Assess Health Care 1991, 7(2):209–219. 10.1017/S0266462300005109CrossRefPubMed
44.
Schulz K, Altman D, Moher D, the CONSORT Group: CONSORT 2010 Statement:updated guidelines for teporting parallel group randomised trials. Trials 2010., 11(32): 10.1186/1745-6215-11-32
45.
Coast J, Flynn TN, Natarajan LS, Lewis J, Louviere JJ, Peters T: Valuing the ICECAP capability index for older people. Soc Sci Med 2008, 67(5):874–882. 10.1016/j.socscimed.2008.05.015CrossRefPubMed
46.
Grewal I, Lewis J, Flynn T, Brown J, Bond J, Coast J: Developing attributes for a generic quality of life measure for older people. Preferences or capabilities? Soc Sci Med 2006, 62(8):1891–1901. 10.1016/j.socscimed.2005.08.023CrossRefPubMed
47.
Coast J, Peters T, Natarajan L, Sproston K, Flynn T: An assessment of the construct validity of the descriptive system for the ICECAP capability measure for older people. Qual Life Res 2008, 17(7):967–976. 10.1007/s11136-008-9372-zCrossRefPubMed
48.
Netten A, Beadle-Brown J, Caiels J, Forder J, Malley J, Smith N, Towers AM, Trukeschitz B, Welch E, Windle K PSSRU Discussion Paper 2716/3. In ASCOT: Main guidance v2. Kent: University of Kent; 2011.
49.
Netten A, Burge P, Malley J, Potoglou D, Towers A, Frazier J, Flynn T, Forder J, Wall B: Outcomes of social care for adults: developing a preference-weighted measure. London. Health Technol Assess 2012, 16(6):1–184.PubMed
Metadata
Title
Health economics research into supporting carers of people with dementia: A systematic review of outcome measures
Authors
Carys Jones
Rhiannon Tudor Edwards
Barry Hounsome
Publication date
01-12-2012
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2012
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/1477-7525-10-142

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