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.

Title
Valuing health at the end of life
Supervisors
Aki Tsuchiya, Allan Wailoo
Repository link
http://etheses.whiterose.ac.uk/17579

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 10th July 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.

Use-of-time and health-related quality of life in 10- to 13-year-old children: not all screen time or physical activity minutes are the same. Quality of life Research [PubMedPublished 3rd July 2017

“If you watch too much TV, it’ll make your eyes square” – something I heard a lot as a child. This first paper explores whether this is true (sort of) by examining associations between aspects of time use and HRQL in children aged 10-13 (disclaimer: I peer reviewed it and was pleased to see them incorporate my views). This paper aims to examine how different types of time use are linked to HRQL. Time use was examined by the Multimedia Activity Recall for Children and Adolescents (MARCA) which separates out time into physical activity (sport, active transport, and play), screen time (TV, videogames, computer use), and sleep. The PedsQL was used to assess HRQL, whilst dual x-ray absorptiometry was used to accurately assess fatness. There were a couple of novel aspects to this study, first, the use of absorptiometry to accurately measure body fat percentage rather than the problematic BMI/skin folds in children; second, separating time out into specific components rather than just treating physical activity or screen time as homogeneous components. The primary findings were that for both genders, fatness (negative), sport (positive) and development stage (negative) were associated with HRQL. For boys, the most important other predictor of HRQL was videogames (negative) whilst predictors for girls included television (negative), active transport (negative) and household income (positive). With the exception of ‘active travel’ for girls, I don’t think any of these findings are particularly surprising. As with all cross-sectional studies of this nature, the authors give caution to the results: inability to demonstrate causality. Despite this, it opens the door for various possibilities for future research, and ideas for shaping future interventions in children this age.

Raise the bar, not the threshold value: meeting patient preferences for palliative and end-of-life care. PharmacoEconomics – Open Published 27th June 2017

Health care ≠ end of life care. Whilst health care seeks to maximise health, can the same be said for end of life care? Probably not. This June saw an editorial elaborating on this issue. Health is an important facet of end of life care. However, there are other substantial objects of value in this context e.g. preferences for place of care, preparedness, reducing family burdens etc. Evidence suggests that people at end of life can value these ‘other’ objects more than health status or life extension. Thus there is value beyond that captured by health. This is an issue for the QALY framework where health and length of life are the sole indicators of benefit. The editorial highlights that this is not people wishing for higher cost-per-QALY thresholds at end of life, instead, it is supporting the valuation of key elements of palliative care within the end of life context. It argues that palliative care interventions often are not amenable to integration with survival time in a QALY framework, this effectively implies that end of life care interventions should be evaluated in a separate framework to health care interventions altogether. The editorial discusses the ICECAP-Supportive Care Measure (designed for economic evaluation of end of life measures) as progress within this research context. An issue with this approach is that it doesn’t address allocative efficiency issues (and comparability) with ‘normal’ health care interventions. However, if end of life care is evaluated separately to regular healthcare, it will lead to better decisions within the EoL context. There is merit to this justification, after all, end of life care is often funded via third parties and arguments could, therefore, be made for adopting a separate framework. This, however, is a contentious area with lots of ongoing interest. For balance, it’s probably worth pointing out Chris’s (he did not ask me to put this in!) book chapter which debates many of these issues, specifically in relation to defining objects of value at end of life and whether the QALY should be altogether abandoned at EoL.

Investigating the relationship between costs and outcomes for English mental health providers: a bi-variate multi-level regression analysis. European Journal of Health Economics [PubMedPublished 24th June 2017

Payment systems that incentivise cost control and quality improvements are increasingly used. In England, until recently, mental health services have been funded via block contracts that do not necessarily incentivise cost control and payment has not been linked to outcomes. The National Tariff Payment System for reimbursement has now been introduced to mental health care. This paper harnesses the MHMDS (now called MHSDS) using multi-level bivariate regression to investigate whether it is possible to control costs without negatively affecting outcomes. It does this by examining the relationship between costs and outcomes for mental health providers. Due to the nature of the data, an appropriate instrumental variable was not available, and so it is important to note that the results do not imply causality. The primary results found that after controlling for key variables (demographics, need, social and treatment) there was a minuscule negative correlation between residual costs and outcomes with little evidence of a meaningful relationship. That is, the data suggest that outcome improvements could be made without incurring a lot more cost. This implies that cost-containment efforts by providers should not undermine outcome-improving efforts under the new payment systems. Something to bear in mind when interpreting the results is that there was a rather large list of limitations associated with the analysis, most notably that the analysis was conducted at a provider level. Although it’s continually improving, there still remain issues with the MHMDS data: poor diagnosis coding, missing outcome data, and poor quality of cost data. As somebody who is yet to use MHMDS data, but plans to in the future, this was a useful paper for generating ideas regarding what is possible and the associated limitations.

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Alastair Canaway’s journal round-up for 5th June 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.

Redistribution and redesign in health care: an ebbing tide in England versus growing concerns in the United States. Health Economics [PubMed] Published 4th May 2017

Health Economics included an editorial that will be of interest to a wider readership. It focusses on the similarities and differences between the US and the UK’s health care systems, particularly in terms of (re)design, redistribution, and the challenges facing each. The UK system is characterised by a preference for collectivism in funding and access, and in the US, a pluralism of funding. In both countries, groups seek to reverse their existing approach (the grass is always greener). The editorial outlines recent changes in healthcare design, notably, the impact of the affordable care act (ACA). The main focus of the editorial is twofold: i) a discussion of the efforts in England to limit public spending whilst increasing hospital sector efficiency, ii) discussion of the US’s attempt to reduce the growth in the role of government in financing and delivering healthcare. In respect to the UK, the diagnosis is worrying yet unsurprising: chronic underfunding combined with a plethora of unevidenced reform proposals has left the NHS on a knife-edge; the prognosis is that it is uncertain whether the NHS will survive the next few years. In the US, the picture is more complex and the paper discussed possible repeal components of the ACA. A key point of the discussion relates to the assumption that US healthcare is much more expensive than any OECD country due to American’s using too much medical care. In fact as the authors note, the evidence points to the contrary, and the high expenditure is due to a myriad of factors including high wages, high drug prices, and a system which requires many more lawyers, administrators and consultants. The paper discusses various nuances with both systems in the current political context and is well worth reading for a quick overview of some the key issues facing both countries.

Statistical alchemy: conceptual validity and mapping to generate health state utility values. Pharmacoeconomics – Open Published 15th May 2017

With a passing interest in mapping and counting myself as a bit of a mapping skeptic, this paper discussing mapping in terms of ‘statistical alchemy’ obviously caught my eye. As most will know, mapping is a frequently used technique to obtain utility estimates by predicting utility values from data collected using other measures. The focus of the paper is ‘conceptual validity’: ‘the degree to which the content of two different instruments reflect one another when used for mapping’. There were three aims i) explain the idea of conceptual validity in relation to mapping, ii) consider the implications of poor conceptual validity when mapping for decision making in the context of resource allocation, and iii) provide suggestions to improve conceptual validity. The paper successfully achieves the first goal with an exposition of the (many) issues with mapping in relation to conceptual validity. The paper highlights that poor conceptual validity will result in systematic biases in the preferences for health when mapped estimates are used. This is aptly demonstrated through an example using a multiple sclerosis measure, and the EQ-5D. A number of ways for improving the conceptual validity are also presented, these include: i) response mapping, ii) assessment of ‘conceptual decision validity’ (which draws upon face, construct and criterion validity) to determine whether there is a prima facie case that a mapping function may lead to a valid decision, and iii) the need to examine ‘what is lost’ should mapping be used. I found it to be a thoughtful paper, and echoed some of my concerns with existing mapping functions. For those interested in conducting a mapping exercise this is an essential read as an introduction to some of the pitfalls you will encounter.

Is there additional value attached to health gains at the end of life? A revisit. Health Economics Published 1st June 2017

Following NICE’s (2009) guidance for the acceptability of higher cost-per-QALY thresholds for life extending treatments, the past eight years has seen an increase in research examining whether the general public actually have an appetite for this. That is, do the general public have a preference for an end of life premium? Many studies have sought to answer this, with mixed results. All previous attempts however, have tackled this issue from an ex-post perspective: respondents are asked to choose between providing treatment after the diagnosis when they face a shorter life expectancy without treatment. The issue highlighted in this paper is that by presenting life expectancy as certain and salient (e.g. 2 years, or 10 years), it may be interpreted as a life sentence regardless of length. This paper goes down an alternative route by adopting an ex-ante insurance approach. Additionally a new comparator is used, end of life treatment is compared with a preventative treatment that offers life extension with the same expected health gain. It also explores whether preferences depend on recipient age. The paper found that preventative treatments were prioritised over end of life treatments, and thus a dearth of justification for the end of life premium exists. This is another addition to the mixed literature regarding preferences for end of life treatments. The paper does have its limitations which it readily admits. It is however another useful addition this tricky research area.

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