The terms health, health-related quality of life (HRQoL), and quality of life (QoL) are often used interchangeably. Given that these are three key terms in the literature, their appropriate and clear use is important. This paper reviews the history and definitions of the terms and considers how the terms have been used. It is argued that the definitions of HRQoL in the literature are problematic because some definitions fail to distinguish between HRQoL and health or between HRQoL and QoL. Many so-called HRQoL questionnaires actually measure self-perceived health status and the use of the phrase QoL is unjustified. It is concluded that the concept of HRQoL as used now is confusing. A potential solution is to define HRQoL as the way health is empirically estimated to affect QoL or use the term to only signify the utility associated with a health state. Key points for decision makers-The term HRQoL is not well defined and most definitions of HRQoL do not sufficiently differentiate the term from health or QoL -Measures of HRQoL are usually more appropriately named measures of selfperceived health status -A clearer use of HRQoL would be to only use it to signify empirical studies of how health affects QoL or to signify the utility associated with a health state Acknowledgement JB proposed initial ideas and paper structure, MK wrote the first and the revised drafts after discussion with JB. JB made comments and revisions on all drafts. Both JB and MK responded to comments from referees.
Despite the importance of health state values in informing resource allocation in health care, there is arguably little known about how individuals value health. Previous studies have shown that a variety of non-health factors and beliefs are important in valuing health, but there is less evidence in the literature about how individuals' beliefs affect their preferences or what role non-health factors play in the process of forming preferences. This study investigated the thought processes of 21 U.K. based participants in March 2013 who valued health states using semi-structured interviews and a think-aloud protocol, with the aim to better understand the relationship between health states, the individual's underlying beliefs, and the individual's preferences. Participants followed several stages in valuing health. First, participants interpreted the health states more concretely, relying on their imagination and their experience of ill health. Participants judged how the concrete health problems combined with their personal interests, circumstances, and environment would affect them personally. Ultimately, participants valued health by estimating and weighing the non-health consequences of the health states. Six consequences were most frequently mentioned: activities, enjoyment, independence, relationships, dignity, and avoiding being a burden. At each stage participants encountered difficulties and expressed concerns. The findings have implications for methods of describing health, for example, whether the focus should be on health or a broader notion of well-being and capability. This is because the consequences are similar to the domains of broader measures such as the ICECAP measures for adults and older people, and the Warwick-Edinburgh Mental Wellbeing Scale. The findings suggest the need for testing whether individuals are informed about the health states they are valuing. Participants valued health by estimating the non-health consequences of health states and these estimates relied on individuals' beliefs about the interaction of the health state and their personal and social circumstances.
BackgroundEvaluation of integrated care programmes for individuals with multi-morbidity requires a broader evaluation framework and a broader definition of added value than is common in cost-utility analysis. This is possible through the use of Multi-Criteria Decision Analysis (MCDA).Methods and resultsThis paper presents the seven steps of an MCDA to evaluate 17 different integrated care programmes for individuals with multi-morbidity in 8 European countries participating in the 4-year, EU-funded SELFIE project. In step one, qualitative research was undertaken to better understand the decision-context of these programmes. The programmes faced decisions related to their sustainability in terms of reimbursement, continuation, extension, and/or wider implementation. In step two, a uniform set of decision criteria was defined in terms of outcomes measured across the 17 programmes: physical functioning, psychological well-being, social relationships and participation, enjoyment of life, resilience, person-centeredness, continuity of care, and total health and social care costs. These were supplemented by programme-type specific outcomes. Step three presents the quasi-experimental studies designed to measure the performance of the programmes on the decision criteria. Step four gives details of the methods (Discrete Choice Experiment, Swing Weighting) to determine the relative importance of the decision criteria among five stakeholder groups per country. An example in step five illustrates the value-based method of MCDA by which the performance of the programmes on each decision criterion is combined with the weight of the respective criterion to derive an overall value score. Step six describes how we deal with uncertainty and introduces the Conditional Multi-Attribute Acceptability Curve. Step seven addresses the interpretation of results in stakeholder workshops.DiscussionBy discussing our solutions to the challenges involved in creating a uniform MCDA approach for the evaluation of different programmes, this paper provides guidance to future evaluations and stimulates debate on how to evaluate integrated care for multi-morbidity.Electronic supplementary materialThe online version of this article (10.1186/s12913-018-3367-4) contains supplementary material, which is available to authorized users.
The widespread adoption of the EuroQol 5-dimensional questionnaire (EQ-5D) has been important for the comparability, transparency, and consistency of economic evaluations for informing resource allocation in healthcare. The objectives of this article were to (1) critically assess whether the widespread adoption of the EQ-5D and its time trade-off ebased value sets to inform economic evaluation is likely to continue and (2) speculate about how benefits may be measured and valued to inform economic evaluation in the future. Evidence supports the use of the EQ-5D in many areas of health, but there are notable gaps. Furthermore, there has been interest among some policy makers in measuring changes in well-being, and in using common outcomes across sectors. Possibilities for measuring well-being alongside health can be achieved through bolt-on dimensions or an entirely new measure capturing both health and well-being. Nevertheless, there are significant concerns about the logic of estimating a common utility function. The development of online valuation methods has had a major impact on the field, which is likely to continue. We, however, recommend more allowance for respondents to consider their answers. There is an ongoing debate on the role of patient values or experience-based values. To date, this has seen limited take-up by decision makers and there are significant technical problems to obtaining representative and meaningful values. Policy makers and the general population must decide on the focus and scope of benefits that are incorporated into economic evaluation, and current evidence on this is mixed. In part, this will determine whether the widespread adoption will continue.
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