A qualitative study of the extent to which health gain matters when choosing between groups of patients

doi:10.1016/S0168-8510(99)00079-2

Health Policy

Volume 51, Issue 1, February 2000, Pages 19-30

https://doi.org/10.1016/S0168-8510(99)00079-2 Get rights and content

Abstract

There is considerable debate about the appropriateness of allocating health care resources on the basis of the size of the health improvement that they generate. The aim of this study was to elicit the general public’s views about the extent to which health gain matters vis-à-vis other considerations. A total of 60 respondents took part in group discussions designed to enable them to raise, discuss, and reflect upon, different arguments. The qualitative data showed that many responses were being generated by factors that were not directly included in the questions, and so it is difficult to meaningfully interpret the results of other studies which have asked similar questions but which have not looked at the reasons underlying the responses. However, a clear message did come through from the data; namely, that equality of access should prevail over the maximisation of benefits. However, this was subject to the outcome constraint that treatments are sufficiently effective. An important question for future research, then, is ‘how effective do treatments have to be for the principle of equal access to apply?’

Introduction

There has been considerable debate in the literature regarding the appropriateness of allocating health care resources on the basis of the size of the health improvement that they generate. Health economists have generally argued that resources should be distributed so as to improve aggregate health as much as possible, whereas others have argued that this would lead to unacceptable discrimination against the elderly, the infirm, and other vulnerable groups in society with lower-than-average capacity to benefit from treatment [1], [2].

As this debate continues, an increasing number of empirical studies are being undertaken by health economists and others to measure the extent to which people are willing to trade-off health gain for other considerations, such as the initial severity of illness or the final distribution of health. These studies have often asked people to adopt the perspective of a decision-maker [3], [4], [5] but some have placed them in the role of a potential patient behind a ‘veil of ignorance’ where they do not know which patient they would be [6].

The empirical studies cited above have asked respondents to give precise quantitative trade-offs to tightly defined questionnaires, often with little or no time for deliberation. Given that it now well-established that seemingly subtle changes in question framing can change the stated preferences of respondents [7], [8], it is not surprising that there is great variation in the quantitative results that these studies have generated. Rather than try to quantify the precise trade-offs of respondents, the aim of this study was to elicit more general (and arguably more meaningful) qualitative information from people regarding the extent to which health gain matters vis-à-vis other considerations. By asking some people to adopt the role of a decision-maker and by placing others behind a veil of ignorance, it was also an attempt to see whether people’s views are a function of the perspective they are asked to adopt.

Section snippets

Study design

To mitigate against the possibility of drawing erroneous conclusions about people’s views, it is important (i) to explore how respondents interpret questions that are put to them (particularly the extent to which they find them plausible), and (ii) to give them time to think about what is being asked of them and opportunity to reflect upon their responses. To achieve this, focus groups were convened to enable respondents to raise, discuss, and reflect upon, different arguments. All group

Qualitative analysis

The aim of this analysis was to build up a picture of what respondents were thinking about when answering the questions they were presented with. There are many ways in which this can be achieved. In this study, word groups were coded within the text using a classification scheme, and then the number of times each idea was mentioned was counted. The classification scheme was built up through an iterative process based on the grounded theoretic approach [10], which starts with an a priori

Results

Of the 72 people invited to the meetings, 60 (83%) attended. Table 2 gives a breakdown of the characteristics of respondents and shows in very general terms that the sample was relatively heterogeneous. The sample was slightly older than would have been expected if it had been truly random (in which case, there would have been approximately one-third of respondents in each of the three age groups) but the proportion of people leaving school at the minimum age was similar to the proportion of

Discussion

Respondents in this study were asked to consider whether and how they would choose between two groups of patients who differ only in terms of their respective gains in length or quality of life. Many respondents appeared to start with a horizontal equity concern for treating everybody equally. For some, this was due to an unwillingness to use capacity to benefit as the only criterion by which to discriminate between the groups. Others appeared to be more concerned with procedural principles

Concluding remarks

Overall, reaction from the public to the focus group methodology was favourable. The general feeling was that group discussions of this kind are worthwhile; but only if they end up having some impact on actual decisions. Only one respondent was strongly critical of the whole enterprise, expressing the view that the debate should focus on getting more funding for the NHS rather than on rationing. And although some respondents initially had difficulty with the questions discussed in this paper,

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Universal healthcare is constrained by national governments' finite health resources. This gives rise to complex priority-setting dilemmas. In several universal healthcare systems, the notion of severity (Norwegian: ‘alvorlighet’) is a key consideration in priority setting, such that treatments for ‘severe’ illness may be prioritised even when evidence suggests it would not be as cost-effective as treatment options for other conditions. However, severity is a poorly-defined concept, and there is no consensus on what severity means in the context of healthcare provision – whether viewed from public, academic, or professional perspectives. Though several public preference-elicitation studies demonstrate that severity is considered relevant in healthcare resource distribution, there is a paucity of research on public perceptions on the actual meaning of severity. We conducted a Q-methodology study between February 2021 and March 2022 to investigate views on severity amongst general public participants in Norway. Group interviews (n = 59) were conducted to gather statements for the Q-sort ranking exercises (n = 34). Data were analysed using by-person factor analysis to identify patterns in the statement rankings. We present a rich picture of perspectives on the term ‘severity’, and identify four different, partly conflicting, views on severity in the Norwegian population, with few areas of consensus. We argue that policymakers ought to be made aware of these differing perspectives on severity, and that there is need for further research on the prevalence of these views and on how they are distributed within populations.
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The use of economic evaluations of end-of-life interventions may be limited by an incomplete appreciation of how patients and society perceive value at end of life. The objective of this study was to evaluate how patients, caregivers, and society value gains in quantity of life and quality of life (QOL) at the end of life. The validity of the assumptions underlying the use of the quality-adjusted life-years (QALY) as a measure of preferences at end of life was also examined.
MEDLINE, Embase, CINAHL, PsycINFO, and PubMed were searched from inception to February 22, 2021. Original research studies reporting empirical data on healthcare priority setting at end of life were included. There was no restriction on the use of either quantitative or qualitative methods. Two reviewers independently screened, selected, and extracted data from studies. Narrative synthesis was conducted for all included studies. The primary outcomes were the value of gains in quantity of life and the value of gains in QOL at end of life.
A total of 51 studies involving 53 981 participants reported that gains in QOL were generally preferred over quantity of life at the end of life across stakeholder groups. Several violations of the underlying assumptions of the QALY to measure preferences at the end of life were observed.
Most patients, caregivers, and members of the general public prioritize gains in QOL over marginal gains in life prolongation at the end of life. These findings suggest that policy evaluations of end-of-life interventions should favor those that improve QOL. QALYs may be an inadequate measure of preferences for end-of-life care thereby limiting their use in formal economic evaluations of end-of-life interventions.
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Citation Excerpt :
For example, surveys have shown that respondents will prioritize those who are sicker or have lower life expectancies8-13 and, to a lesser extent, those who are younger.14-17 Respondents are also comfortable foregoing efficiency to ensure equal access to a service.18-21 Surveys involving decision makers, mainly using stated preference methods, have suggested similar preferences, though efficiency often takes precedence over equity.22-25
This systematic review aims to catalogue and describe published applications of equity-informative cost-effectiveness analysis (CEAs).
Following PRISMA guidelines, we searched Medline for English-language, peer-reviewed CEAs published on or before August 2019. We included CEAs that evaluated 2 or more alternatives; explicitly mentioned equity as a consideration or decision-making principle; and applied an equity-informative CEA method to analyze or examine at least 1 equity criterion in an applied CEA. We extracted data on selected characteristics and analyzed reporting quality using the CHEERS checklist.
Fifty-four articles identified through a search and bibliography reviews met the inclusion criteria. All articles were published on or after 2010, with 80% published after 2015. Most studies evaluated primary prevention interventions in disease areas such as cancer, infectious diseases, and cardiovascular disease. Equity impact analysis alone was the most common equity-informative CEA (56%), followed by equity impact analysis with financial protection effects (30%). At least 11 different equity criteria have been used in equity-informative CEAs; socioeconomic status and race/ethnicity were used most frequently. Seventy-eight percent of studies reported finding “greater value” in an intervention after examining its distributional effects.
The number of equity-informative CEAs is increasing, and the wide range of equity criteria, diseases, interventions, settings, and populations represented suggests that broad application of these methods is feasible but will require further refinement. Inclusion of equity into CEAs may shift the value of evaluated interventions and can provide crucial additional information for decision makers.
Valuing health at the end of life: A review of stated preference studies in the social sciences literature
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Another study examined respondents' willingness-to-pay for life extensions not only for themselves but also for a family member (via an out-of-pocket payment) and for an unidentified member of society (via a tax increase) (Shiroiwa et al., 2010). One study compared two operationalisations of the social decision-maker perspective, asking half of the respondents to adopt the role of a decision-maker and assigning the other half to a ‘veil of ignorance’ condition (Dolan and Cookson, 2000). In one of the Q methodology studies, the vast majority of statements presented were framed in a manner consistent with a social decision-maker perspective, though a few referred to the respondent's own health or situation – for example, “I wouldn't want my life to be extending just for the sake of it – just keeping breathing is not life” (McHugh et al., 2015).
A source of debate in the health care priority setting literature is whether to weight health gains to account for equity considerations, such as concern for those with very short life expectancy. This paper reviews the empirical evidence in the published social sciences literature relevant to the following research question: do members of the public wish to place greater weight on a unit of health gain for end-of-life patients than on that for other types of patients? An electronic search of the Social Sciences Citation Index for articles published until October 2017 was conducted, with follow-up of references to obtain additional data. Hierarchical criteria were applied to select empirical studies reporting stated preferences relating to hypothetical health care priority setting contexts.
Twenty-three studies met the inclusion criteria and were included in the review. Choice exercises were the most common method used to elicit preferences; other approaches included budget allocation, person trade-off and willingness-to-pay. Some studies found that observed preferences regarding end-of-life patients are influenced by information about the patients' ages. Overall, the evidence is mixed, with eight studies that report evidence consistent with a ‘premium’ for end-of-life treatments and 11 studies that do not. Methodological and design aspects that appear to influence the findings of end-of-life-related preference studies are identified and discussed. The findings of the UK studies have particular relevance for assessing the legitimacy of the National Institute for Health and Care Excellence's policy for appraising life-extending end-of-life treatments.
Understanding what matters: An exploratory study to investigate the views of the general public for priority setting criteria in health care
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There are several limitations to our study including the relatively small sample size, there were no participants in the younger age group (aged 18–30 years) in Focus group 3 and data on the cultural backgrounds of participants were not available. Despite these limitations, there are notable similarities in our findings with those from other qualitative studies in this area [12–16]. A key finding from our study for Australian health policy makers is that efficiency is not the only criterion of importance.
Health care policy makers internationally are increasingly expressing commitment to consultation with, and incorporation of, the views of the general public into the formulation of health policy and the process of setting health care priorities. In practice, however, there are relatively few opportunities for the general public to be involved in health care decision-making. In making resource allocation decisions, funders, tasked with managing scarce health care resources, are often faced with difficult decisions in balancing efficiency with equity considerations. A mixed methods (qualitative and quantitative) approach incorporating focus group discussions and a ranking exercise was utilised to develop a comprehensive list of potential criteria for setting priorities in health care formulated from the perspective of members of the general public in Australia. A strong level of congruence was found in terms of the rankings of the key criteria with the size of the health gain, clinical effectiveness, and the ability to provide quality of life improvements identified consistently as the three most important criteria for prioritising the funding of an intervention. Findings from this study will be incorporated into a novel DCE framework to explore how decision makers and members of the general public prioritize and trade off different types of health gain and to quantify the weights attached to specific efficiency and equity criteria in the priority setting process.

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A qualitative study of the extent to which health gain matters when choosing between groups of patients

Abstract

Introduction

Section snippets

Study design

Qualitative analysis

Results

Discussion

Concluding remarks

Health Policy

Social Sci. Med.

J. Health Econ.

J. Health Econ.

Health Pol.

J.Health Econ.

J. Health Econ.

Imprecise preferences and survey design in contingent valuation

Economica

Determinants of insensitivity to quantity in valuation of public goods-contribution, warm glow, budget constraints, availability and prominence

J. Exp. Psychol. Appl.