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Quality of Life Research
Published in: Quality of Life Research 2/2014

Open Access 01-03-2014

A framework for understanding quality of life in individuals without capacity

Authors: Jeff Round, Elizabeth L. Sampson, Louise Jones

Published in: Quality of Life Research | Issue 2/2014

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Abstract

Purpose

The wide range of tools and methods developed for measuring and valuing health-related quality of life for use in economic evaluations are appropriate for use in most populations. However, for certain populations, specific tools may need to be developed to reflect the particular needs of that population. Patients without capacity—particularly patients with severe dementia—are such a population. At present, the tools available to economists for measuring and valuing quality of life in these patients lack validity. Here, we seek to understand the framework within which common instruments have been developed, critique these instruments with respect to patients with severely restricted capacity and to develop a new way of thinking about how to value health-related quality of life in such patients.

Method

In this essay, we describe and critique the conceptual framework by which common instruments used for measuring and valuing quality of life have been developed.

Results

We show that current common instruments used for measuring and valuing quality of life in general populations are not appropriate for populations with severely restricted capacity.

Conclusions

We propose a new framework for thinking about quality of life in this population, based on notions of observable person-centred outcomes and utility derived from processes of care.
Literature
1.
National Institute for Health and Clinical Excellence (2008) Guide to the methods of technology appraisal; National Institute for Health and Clinical Excellence.
2.
Briggs, Andrew, Calxton, Karl, & Sculpher, Mark. (1). Decision Modelling for Health Economic Evaluation. Oxford: Oxford University Press.
3.
Drummond, Michael F. (2005). MJSGWTBJOaGLS: Methods for the Economic Evaluation of Health Care Programmes (Vol. 3). Oxford: Oxford University Press.
4.
Al-Janabi, H., Flynn, T. N., & Coast, J. (2012). Development of a self-report measure of capability wellbeing for adults: the ICECAP-A. Quality of Life Research, 21, 167–176.PubMedCentralPubMedCrossRef
5.
Sclan, S. G., & Reisberg, B. (1992). Functional assessment staging (FAST) in Alzheimer’s disease: Reliability, validity, and ordinality. International Psychogeriatrics, 4(Suppl 1), 55–69.PubMedCrossRef
6.
Reisberg, B., Sclan, S. G., Franssen, E., Kluger, A., & Ferris, S. (1994). Dementia staging in chronic care populations. Alzheimer Disease and Associated Disorders, 8(Suppl 1), S188–S205.PubMed
7.
Drummond, M., Brixner, D., Gold, M., Kind, P., McGuire, A., & Nord, E. (2009). Toward a consensus on the QALY. Value Health, 12(Suppl 1), S31–S35.PubMedCrossRef
8.
Normand, C. (2009). Measuring outcomes in palliative care: Limitations of QALYs and the road to PalYs. Journal of Pain and Symptom Management, 38, 27–31.PubMedCrossRef
9.
Chochinov, H. M. (2011). Death, time and the theory of relativity. Journal of Pain and Symptom Management, 42, 460–463.PubMedCrossRef
10.
Coast J, Lavender S. (2009). An exploration of the economics of end of life care; Health Economists Study Group, Winter 2009.
11.
Round, J. (2012). Is a QALY still a QALY at the end of life? Journal of Health Economics, 31(3), 21–52.
12.
Edlin, R., McCabe, C., Round, J., Wright, J.,  Claxton, K., Sculpher, M., & Cookson, R. (2013). Understanding Harris’ understanding of CEA: Is cost effective resource allocation undone? Journal of Health Services Research and Policy, 18(1), 34–39.
13.
Streiner, D. L., & Norman, G. R. (2003). Health Measurement Scales (Vol. 3). Oxford: Oxford University Press.
14.
Brazier, J., Ratcliffe, J., Salomon, J., & Tsuchiya, A. (2007). Measuring and Valuing Health Benefits for Economic Evaluation (ed) (Vol. 1). Oxford: Oxford University Press.
15.
Selai, C., Trimble, M. R., Rosser, M. N., & Harvey, R. J. (2012). Assessing quality of life in dementia: Preliminary psychometric testing of the Quality of Life Assessment Schedule (QOLAS). Neuropsychological Rehabilitation, 11, 219–243.CrossRef
16.
Magaziner, J., Simonsick, E. M., Kashner, T. M., & Hebel, J. R. (1988). Patient-proxy response comparability on measures of patient health and functional status. Journal of Clinical Epidemiology, 41, 1065–1074.PubMedCrossRef
17.
Gifford, J. M., Husain, N., Dinglas, V. D., Colantuoni, E., & Needham, D. M. (2010). Baseline quality of life before intensive care: A comparison of patient versus proxy responses. Critical Care Medicine, 38, 855–860.PubMedCentralPubMedCrossRef
18.
Yip, J. Y., Wilber, K. H., Myrtle, R. C., & Grazman, D. N. (2001). Comparison of older adult subject and proxy responses on the SF-36 health-related quality of life instrument. Aging Mental Health, 5, 136–142.PubMedCrossRef
19.
Jensen-Dahm, C., Vogel, A., Waldorff, F. B., & Waldemar, G. (2012). Discrepancy between self- and proxy-rated pain in Alzheimer’s disease: Results from the danish alzheimer intervention study. Journal of the American Geriatrics Society, 60, 1274–1278.PubMedCrossRef
20.
Coast, J., Smith, R., & Lorgelly, P. (2008). Should the capability approach be applied in health economics? Health Economics, 17, 667–670.PubMedCrossRef
21.
Coast, J., Flynn, T., Sutton, E., Al-Janabi, H., Vosper, J., Lavender, S., et al. (2008). Investigating choice experiments for preferences of older people (ICEPOP): Evaluative spaces in health economics. Journal of health services research and policy, 13(Suppl 3), 31–37.PubMedCrossRef
22.
Dolan P, R Layard, R Metcalfe (2011) Measuring subjective wellbeing for public policy: Recommendations on measures.
23.
Stiglitz J, A Sen, JP Fitoussi (2009) Report by the Commission on the Measurement of Economic Performance and Social Progress.
24.
Smith, S. C., Lamping, D. L., Banerjee, S., Harwood, R. H., Foley, B., Smith, P., et al. (2007). Development of a new measure of health-related quality of life for people with dementia: DEMQOL. Psychological Medicine, 37, 737–746.PubMedCrossRef
25.
Weiner, M. F., Martin-Cook, K., Svetlik, D. A., Saine, K., Foster, B., & Fontaine, C. S. (2000). The quality of life in late-stage dementia (QUALID) scale. Journal of the American Medical Directors Association, 1, 114–116.PubMed
26.
Logsdon, R. G., Gibbons, L. E., McCurry, S. M., & Teri, L. (2002). Assessing quality of life in older adults with cognitive impairment. Psychosomatic Medicine, 64, 510–519.PubMed
27.
Brazier, J. E., Yang, Y., Tsuchiya, A., & Rowen, D. L. (2010). A review of studies mapping (or cross walking) non-preference based measures of health to generic preference-based measures. The European journal of health economics, 11, 215–225.PubMedCrossRef
28.
Barton, G. R., Sach, T. H., Jenkinson, C., Avery, A. J., Doherty, M., & Muir, K. R. (2008). Do estimates of cost-utility based on the EQ-5D differ from those based on the mapping of utility scores? Health Quality Life Outcomes, 6, 51.CrossRef
29.
Lawton, M. P. (1997). Assessing quality of life in Alzheimer disease research. Alzheimer Disease and Associated Disorders, 11(Suppl 6), 91–99.PubMed
30.
Stevens, K. J. (2010). Working with children to develop dimensions for a preference-based, generic, pediatric, health-related quality-of-life measure. Qualitative Health Research, 20, 340–351.PubMedCrossRef
31.
Novella, J. L., Jochum, C., Jolly, D., Morrone, I., Ankri, J., Bureau, F., et al. (2001). Agreement between patients’ and proxies’ reports of quality of life in Alzheimer’s disease. Quality of Life Research, 10, 443–452.PubMedCrossRef
32.
Cooper C, Mukadam N, Katona C, Lyketsos CG, Blazer D, Ames D, Rabins P, Brodaty H, de Mendonca LC, Livingston G (2012) Systematic Review of the Effectiveness of Pharmacologic Interventions to Improve Quality of Life and Well-being in People With Dementia. Am J Geriatr Psychiatry.
33.
Cooper, C., Mukadam, N., Katona, C., Lyketsos, C. G., Ames, D., Rabins, P., et al. (2012). Systematic review of the effectiveness of non-pharmacological interventions to improve quality of life of people with dementia. International Psychogeriatrics, 24, 856–870.PubMedCrossRef
34.
Brennan V, S Dixon (2012) A literature review for empirical studies of process utility; ISPOR 17th Annual Internation Meeting.
35.
Jones L, Harrington J, Scott S, Davis S, Lord K, Vickerstaff V, Round J, Candy B, Sampson EL (2012) CoMPASs: IOn programme (Care Of Memory Problems in Advanced Stages of dementia: Improving Our Knowledge): protocol for a mixed methods study. BMJ Open 2.
36.
Jie, W., Weiss, David J., & Edwards, Ward. (2010). A descriptive multi-attribute utility model for everyday decisions. Theory and Decision, 68, 101–114.CrossRef
37.
Gigerenzer, G., & Todd, P. (1999). And the ABC research group: Simple heuristics that make us smart. New York: Oxford University Press.
38.
Tversky, A., & Kahneman, D. (1974). Judgment under uncertainty: Heuristics and biases. Science, 185, 1124–1131.PubMedCrossRef
39.
Dolan, P., Lee, H., & Peasgood, T. (2012). Losing sight of the wood for the trees: Some issues in describing and valuing health, and another possible approach. Pharmacoeconomics, 30, 1035–1049.PubMedCrossRef
40.
41.
Wailoo, A., Tsuchiya, A., & McCabe, C. (2009). Weighting must wait: incorporating equity concerns into cost-effectiveness analysis may take longer than expected. Pharmacoeconomics, 27, 983–989.PubMedCrossRef
42.
Brazier, J., Akehurst, R., Brennan, A., Dolan, P., Claxton, K., McCabe, C., et al. (2005). Should patients have a greater role in valuing health states? Applied Health Economics Health Policy, 4, 201–208.PubMedCrossRef
Metadata
Title
A framework for understanding quality of life in individuals without capacity
Authors
Jeff Round
Elizabeth L. Sampson
Louise Jones
Publication date
01-03-2014
Publisher
Springer International Publishing
Published in
Quality of Life Research / Issue 2/2014
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-013-0500-z

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