Thesis Thursday: Koonal Shah

On the third Thursday of every month, we speak to a recent graduate about their thesis and their studies. This month’s guest is Dr Koonal Shah who has a PhD from the University of Sheffield. If you would like to suggest a candidate for an upcoming Thesis Thursday, get in touch.

Valuing health at the end of life
Aki Tsuchiya, Allan Wailoo
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What were the key questions you wanted to answer with your research?

My key research question was: Do members of the general 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? Or put more concisely: Is there evidence of public support for an end of life premium?

The research question was motivated by a policy introduced by NICE in 2009 [PDF], which effectively gives special weighting to health gains generated by life-extending end of life treatments. This represents an explicit departure from the Institute’s reference case position that all equal-sized health gains are of equal social value (the ‘a QALY is a QALY’ rule). NICE’s policy was justified in part by claims that it represented the preferences of society, but little evidence was available to either support or refute that premise. It was this gap in the evidence that inspired my research question.

I also sought to answer other questions, such as whether the focus on life extensions (rather than quality of life improvements) in NICE’s policy is consistent with public preferences, and whether people’s stated end of life-related preferences depend on the ways in which the preference elicitation tasks are designed, framed and presented.

Which methodologies did you use to elicit people’s preferences?

All four of my empirical studies used hypothetical choice exercises to elicit preferences from samples of the UK general public. NICE’s policy was used as the framework for the designs in each case. Three of the studies can be described as having used simple choice tasks, while one study specifically applied the discrete choice experiment methodology. The general approach was to ask survey respondents which of two hypothetical patients they thought should be treated, assuming that the health service had only enough funds to treat one of them.

In my final study, which focused on framing effects and study design considerations, I included attitudinal questions with Likert item responses alongside the hypothetical choice tasks. The rationale for including these questions was to examine the consistency of respondents’ views across two different approaches (spoiler: most people are not very consistent).

Your study included face-to-face interviews. Did these provide you with information that you weren’t able to obtain from a more general survey?

The surveys in my first two empirical studies were both administered via face-to-face interviews. In the first study, I conducted the interviews myself, while in the second study the interviews were subcontracted to a market research agency. I also conducted a small number of face-to-face interviews when pilot testing early versions of the surveys for my third and fourth studies. The piloting process was useful as it provided me with first-hand information about which aspects of the surveys did and did not work well when administered in practice. It also gave me a sense of how appropriate my questions were. The subject matter – prioritising between patients described as having terminal illnesses and poor prognoses – had the potential to be distressing for some people. My view was that I shouldn’t be including questions that I did not feel comfortable asking strangers in an interview setting.

The use of face-to-face interviews was particularly valuable in my first study as it allowed me to ask debrief questions designed to probe respondents and elicit qualitative information about the thinking behind their responses.

What factors influence people’s preferences for allocating health care resources at the end of life?

My research suggests that people’s preferences regarding the value of end of life treatments can depend on whether the treatment is life-extending or quality of life-improving. This is noteworthy because NICE’s end of life criteria accommodate life extensions but not quality of life improvements.

I also found that the amount of time that end of life patients have to ‘prepare for death’ was a consideration for a number of respondents. Some of my results suggest that observed preferences for prioritising the treatment of end of life patients may be driven by concern about how long the patients have known their prognosis rather than by concern about how long they have left to live, per se.

The wider literature suggests that the age of the end of life patients (which may act as a proxy for their role in their household or in society) may also matter. Some studies have reported evidence that respondents become less concerned about the number of remaining life years when the patients in question are relatively old. This is consistent with the ‘fair innings’ argument proposed by Alan Williams.

Given the findings of your study, are there any circumstances under which you would support an end of life premium?

My findings offer limited support for an end of life premium (though it should be noted that the wider literature is more equivocal). So it might be considered appropriate for NICE to abandon its end of life policy on the grounds that the population health losses that arise due to the policy are not justified by the evidence on societal preferences. However, there may be arguments for retaining some form of end of life weighting irrespective of societal preferences. For example, if the standard QALY approach systematically underestimates the benefits of end of life treatments, it may be appropriate to correct for this (though whether this is actually the case would itself need investigating).

Many studies reporting that people wish to prioritise the treatment of the severely ill have described severity in terms of quality of life rather than life expectancy. And some of my results suggest that support for an end of life premium would be stronger if it applied to quality of life-improving treatments. This suggests that weighting QALYs in accordance with continuous variables capturing quality of life as well as life expectancy may be more consistent with public preferences than the current practice of applying binary cut-offs based only on life expectancy information, and would address some of the criticisms of the arbitrariness of NICE’s policy.

Alastair Canaway’s journal round-up for 20th February 2017

Every Monday our authors provide a round-up of some of the most recently published peer reviewed articles from the field. We don’t cover everything, or even what’s most important – just a few papers that have interested the author. Visit our Resources page for links to more journals or follow the HealthEconBot. If you’d like to write one of our weekly journal round-ups, get in touch.

The estimation and inclusion of presenteeism costs in applied economic evaluation: a systematic review. Value in Health Published 30th January 2017

Presenteeism is one of those issues that you hear about from time to time, but rarely see addressed within economic evaluations. For those who haven’t come across it before, presenteeism refers to being at work, but not working at full capacity, for example, due to your health limiting your ability to work. The literature suggests that given presenteeism can have large associated costs which could significantly impact economic evaluations, it should be considered. These impacts are rarely captured in practice. This paper sought to identify studies where presenteeism costs were included, examined how valuation was approached and the degree of impact of including presenteeism on costs. The review included cost of illness studies as well as economic evaluations, just 28 papers had attempted to capture the costs of presenteeism, these were in a wide variety of disease areas. A range of methods was used, across all studies, presenteeism costs accounted for 52% (range from 19%-85%) of the total costs relating to the intervention and disease. This is a vast proportion and significantly outweighed absenteeism costs. Presenteeism is clearly a significant issue, yet widely ignored within economic evaluation. This in part may be due to the health and social care perspective advised within the NICE reference case and compounded by the lack of guidance in how to measure and value productivity costs. Should an economic evaluation pursue a societal perspective, the findings suggest that capturing and valuing presenteeism costs should be a priority.

Priority to end of life treatments? Views of the public in the Netherlands. Value in Health Published 5th January 2017

Everybody dies, and thus, end of life care is probably something that we should all have at least a passing interest in. The end of life context is an incredibly tricky research area with methodological pitfalls at every turn. End of life care is often seen as ‘different’ to other care, and this is reflected in NICE having supplementary guidance for the appraisal of end of life interventions. Similarly, in the Netherlands, treatments that do not meet typical cost per QALY thresholds may be provided should public support be sufficient. There, however, is a dearth of such evidence, and this paper sought to elucidate this issue using the novel Q methodology. Three primary viewpoints emerged: 1) Access to healthcare as a human right – all have equal rights regardless of setting, that is, nobody is more important. Viewpoint one appeared to reject the notion of scarce resources when it comes to health: ‘you can’t put a price on life’. 2) The second group focussed on providing the ‘right’ care for those with terminal illness and emphasised that quality of life should be respected and unnecessary care at end of life should be avoided. This second group did not place great importance on cost-effectiveness but did acknowledge that costly treatments at end of life might not be the best use of money. 3) Finally, the third group felt there should be a focus on care which is effective and efficient, that is, those treatments which generate the most health should be prioritised. There was a consensus across all three groups that the ultimate goal of the health system is to generate the greatest overall health benefit for the population. This rejects the notion that priority should be given to those at end of life and the study concludes that across the three groups there was minimal support for the possibility of the terminally ill being treated with priority.

Methodological issues surrounding the use of baseline health-related quality of life data to inform trial-based economic evaluations of interventions within emergency and critical care settings: a systematic literature review. PharmacoEconomics [PubMed] Published 6th January 2017

Catchy title. Conducting research within emergency and critical settings presents a number of unique challenges. For the health economist seeking to conduct a trial based economic evaluation, one such issue relates to the calculation of QALYs. To calculate QALYs within a trial, baseline and follow-up data are required. For obvious reasons – severe and acute injuries/illness, unplanned admission – collecting baseline data on those entering emergency and critical care is problematic. Even when patients are conscious, there are ethical issues surrounding collecting baseline data in this setting, the example used relates to somebody being conscious after cardiac arrest, is it appropriate to be getting them to complete HRQL questionnaires? Probably not. Various methods have been used to circumnavigate this issue; this paper sought to systematically review the methods that have been used and provide guidance for future studies. Just 19 studies made it through screening, thus highlighting the difficulty of research in this context. Just one study prospectively collected baseline HRQL data, and this was restricted to patients in a non-life threatening state. Four different strategies were adopted in the remaining papers. Eight studies adopted a fixed health utility for all participants at baseline, four used only the available data, that is, from the first time point where HRQL was measured. One asked patients to retrospectively recall their baseline state, whilst one other used Delphi methods to derive EQ-5D states from experts. The paper examines the implications and limitations of adopting each of these strategies. The key finding seems to relate to whether or not the trial arms are balanced with respect to HRQL at baseline. This obviously isn’t observed, the authors suggest trial covariates should instead be used to explore this, and adjustments made where applicable. If, and that’s a big if, trial arms are balanced, then all of the four methods suggested should give similar answers. It seems the key here is the randomisation, however, even the best randomisation techniques do not always lead to balanced arms and there is no guarantee of baseline balance. The authors conclude trials should aim to make an initial assessment of HRQL at the earliest opportunity and that further research is required to thoroughly examine how the different approaches will impact cost-effectiveness results.


Incentives and social preferences

Incentives are widely and frequently used to influence preferences among people with the aim of achieving some socially beneficial end. These incentives include fines, rewards, and taxes. From the domain of health, Pigouvian taxes on foods deemed unhealthy and pricing schemes for alcohol are examples of such incentives. But, evidence often reveals that these incentives are not having the effect that would be expected from a rational homo economicus; often the effect is smaller than expected and in some cases is the opposite of what is expected. In one well-cited experiment, the imposition of fines on parents arriving late to pick up their children in Haifa, Israel, resulted in double the number of late pick-ups (Gneezy and Rustichini, 2000). Social preferences must be playing a role. In an extensive review of economic experiments, Bowles and Polania-Reyes (2012) examine whether economic incentives and social preferences are substitutes or complements. For policy-makers, the non-separability of incentives and social preferences is important; if incentives act as a substitute for preferences for some socially beneficial end, then their imposition will lead to lower than expected or opposite effects.

To examine how social preferences and incentives interact, Bowles and Polania-Reyes identify two types of preference: state-dependent and endogenous. They distinguish them as follows:

As Italian residents, your authors now eat a lot more pasta than we did in our countries of origin. Abstracting from possible international price differences, this could be another case of “when in Rome, do as the Romans.” Or it might be that we have newly come to enjoy the taste of pasta, perhaps through extensive exposure to it while in Italy. Which case it is—state-dependent or endogenous preferences—would be revealed by what we will eat back in Bogotá or Santa Fe. If we go back to arepas or potatoes, then our taste for pasta was state-dependent. If we remain pastaphiles, then our preferences have endogenously changed.

Extending from this, the authors define mechanisms by which incentives and preferences interact. Under a state-dependent mechanism, the situation, environment, or way (e.g. the state) in which an incentive is administered can alter preferences in three ways:

  • Bad news – the incentive provides information about those administering the incentive (the principal).
  • Moral disengagement – the incentive ‘crowds out’ moral values; in the absence of an incentive individuals rely on moral preferences.
  • Control aversion – Incentives compromise self-determination; people do not like being manipulated and wish to be treated with dignity and autonomy.

All three cases are relevant to health policy, but, perhaps, it is the last that may have the largest effect. There are frequent attempts to provide incentives to manipulate the diet and drinking and smoking habits of individuals. Fast food and fizzy drinks taxes have been proposed frequently (e.g. here and here). A purely rational homo economicus would respond accordingly to these taxes and adjust her preferences in accordance with the differing marginal cost. But, these taxes may be viewed as a dictation of behaviour from a political class without regard or understanding for choices or preferences for those from different backgrounds and the response may be to do exactly the opposite. Similarly, an imposition of a Pigouvian tax may lead to moral disengagement as the tax and market act as a substitute for social responsibility to protect health.

Incentives may alter preference acquisition in the long-term as they influence economic rewards and social status of those with different preferences. The economic structure of a society has been shown to affect parental child rearing values, personality traits, and developmental influences (Bowles, 1998). From a broader, political economic perspective, the economic structure of society also provides the opportunities, objectives and constraints under which state managers operate. They have to balance both trying to improve public health with the necessity for electoral success (other self-interested motives notwithstanding). The economic structure which leads to preferences among the poor for health-related behaviours that generally have a negative aggregate effect on public health is the same economic structure that leads state managers using taxes and fines to both provide incentives to alter health-related preferences but also to shift the burden of the net result of those preferences onto those individuals. But, for the aforementioned reasons, including social position and wealth, these incentives may just replicate the same socioeconomic conditions that may have led to the acquisition of those preferences in the first place.

Incentives could also have a crowding-in effect; amplifying already existing social preferences. However, understanding when this is the case is very difficult ex ante. Bowles and Polania-Reyes conclude their study with the following:

The policy package of which the incentives are part should let the target understand that the desired modification in her actions will serve to implement an outcome that is socially beneficial so that the target is more likely to endorse the purpose of the incentive, rather than being offended by it as either unjust or a threat to her autonomy or in some other way reflecting badly on the intentions of the planner.

What is also clear is that, particularly in the case of health policy, creating a distinction between an economic world and a non-economic social and political world, as is the case in much of neoclassical economics, may serve as a hindrance to understanding and implementing effective policy.