Koonal Shah - Presentation at Priorities 2016, Birmingham, 7 September 2016

1. Koonal Shah
Presentation at Priorities 2016
Birmingham ● 7 September
Does society wish to prioritise
end-of-life treatments over
other types of treatment?

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• This research is a collaboration between Koonal Shah
(Office of Health Economics; University of Sheffield) and
Professors Aki Tsuchiya and Allan Wailoo (both University
of Sheffield)
• The literature review reported here is in-progress and its
results should be treated as preliminary
• The views, and any errors or omissions, expressed are of
the presenting author only
Preamble

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Criteria that need to be satisfied for NICE’s supplementary
end of life policy to apply are currently as follows:
NICE end of life criteria
C2
The treatment is indicated for patients with a short
life expectancy, normally less than 24 months
There is sufficient evidence to indicate that the
treatment offers an extension to life, normally of at
least an additional three months, compared to current
NHS treatment
The treatment is licensed or otherwise indicated, for
small patient populations
C3
C1

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• Placing additional weight on survival benefits in patients
with short remaining life expectancy could be considered a
valid representation of society's preferences
• But the NICE consultation revealed concerns that there is
little scientific evidence to support this premise
• Two (unpublished) reviews of the stated preference /
empirical ethics literature undertaken in 2011 did not
identify many relevant studies
NICE end of life criteria (2)

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• To review the published literature that is relevant to the
following research question:
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?
• To identify the extent to which public preferences on this
topic have been studied in the peer-reviewed literature
• To provide an in-depth account of the methods used to
elicit preferences and the findings of the studies, with the
intention of informing policy decisions and future research
in this area
Objectives

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• Primary source of data: electronic search of the Social
Sciences Citation Index (SSCI) within Web of Science
• Follow-up of reference lists of articles identified using the
final SSCI search
• Articles already known to me that met the criteria for
inclusion
Data sources

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("end of life" OR severity OR terminal OR “life expectancy”)
AND preferences
AND health
AND (respondents OR subjects OR participants OR sampl*)
• Yielded 598 unique results
Final strategy

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To be included, articles had to meet all of the following sequential criteria:
1. Publication: Article must be published in English in a peer-reviewed
source.
2. Empirical data: Article must review, present or analyse empirical data.
3. Priority-setting context: Article must relate to a health care priority-
setting or resource allocation context.
4. Stated preference data: Article must report preferences that were
elicited in a hypothetical, stated context using a choice-based approach
involving trade-offs.
5. End of life: Article must address the topic of giving priority to end of life
patients (i.e. patients with short life expectancy) or to treatments for
such patients.
6. Original research: Article must present original research and must not
be solely a review of the literature.
Selection of studies for inclusion

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Search results

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Summary of included studies (n=17)
Authors (date) Country Sample size (type) Method Mode Summary of primary study objective(s)
Abel Olsen (2013) NOR 503 (public) Choice Internet survey To test for support for end of life prioritisation and the fair innings approach
Baker et al. (2010) UK 587 (public) DCE CAPI To test for support for multiple prioritisation criteria
Dolan and Cookson
(2000)
UK 60 (public) Choice Focus groups Qualitative examination of support for multiple prioritisation criteria
Dolan and Shaw
(2004)
UK 23 (public) Choice Focus group To test for support for multiple prioritisation criteria
Dolan and Tsuchiya
(2005)
UK 100 (public) Choice;
ranking
Self-completion survey To compare support for prioritisation according to age vs. prioritisation
according to severity/life expectancy
Kvamme et al. (2010) NOR 2,143 (public) WTP Internet survey To test for non-linear utility of short life extensions from an individual
perspective
Lim et al. (2012) KOR 800 (public) DCE Internet survey To test for support for multiple prioritisation criteria
Linley and Hughes
(2013)
UK 4,118 (public) Budget
allocation
Internet survey To test for support for multiple prioritisation criteria
Pennington et al.
(2015)
Multiple 17,657 (public) WTP Internet survey To compare WTP for different types of QALY gain
Pinto-Prades et al.
(2014)
SPA 813 (public) WTP;
PTO
CAPI To test for support for end of life prioritisation and to compare support for
life extensions vs. quality of life improvements
Richardson et al.
(2012)
AUS 544 (public) Other Internet survey and
self-completion survey
To test a technique for measuring support for health-maximisation and
health sharing
Rowen et al. (2015) UK 3,669 (public) DCE Internet survey To test for support for multiple prioritisation criteria
Shah et al. (2014) UK 50 (public) Choice Person interview To test for support for end of life prioritisation
Shah et al. (2015) UK 3,969 (public) DCE Internet survey To test for support for end of life prioritisation
Skedgel et al. (2015) CAN 656 (public, decision-
makers)
DCE Internet survey To test for support for multiple prioritisation criteria
Stahl et al. (2008) USA 623 (public) Choice Internet survey To test for support for multiple prioritisation criteria
Stolk et al. (2005) NLD 65 (students,
researchers, health
policy makers)
Choice Personal interview To test for support for multiple approaches to priority-setting

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Summary of findings
Freq. %
Overall finding: end of life premium
- Evidence consistent with an end of life premium
- Evidence not consistent with an end of life premium
- Mixed or inconclusive evidence
7
7
3
41.2%
41.2%
17.6%
Overall finding: quality of life-improving vs. life-extending end of life treatments
- Quality of life improvement preferred
- Life extension preferred
- Not examined / reported
2
1
14
11.8%
5.9%
82.4%

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Distribution of selected variables, by
overall study finding
* Study combining PTO and WTP methods counted as two studies since separate results are reported for both. Study combining
ranking exercise and other choice exercise counted as one study since this is considered to be a single hybrid method.
Variable Evidence consistent with
an end of life premium
Evidence not consistent
with an end of life
premium
Country
- UK
- Europe (non-UK)
- Rest of the world
2
3
2
4
2
1
Method*
- DCE
- Other choice exercise
- Willingness to pay
- Other
2
2
3
1
2
3
0
2
Mode of administration
- Internet survey
- Other
5
2
4
3
Indifference option(s) offered?
- Yes
- No or not reported
5
2
1
6
Visual aids used?
- Yes
- No or not reported
5
2
2
5

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Discussion point: choice of method
• Most studies asked respondents to adopt a ‘social decision
maker’ perspective
• The three willingness to pay (WTP) studies asked respondents to
adopt an individual or ‘own health’ perspective
• But are WTP valuations made by individuals facing the
(hypothetical) prospect of imminent death a useful way of
guiding decisions about how to spend a common pool of
funding?

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Discussion points: indifference
options and visual aids
• Studies offering opportunity to express indifference between
alternatives were more likely to report evidence consistent with
an end of life premium than those that did not
• Way in which indifference options are framed may affect
respondents’ willingness to choose those options
• Trend towards discrete choice experiments administered via
internet surveys suggests that indifference options may become
less frequent
• Studies that used visual aids were more likely to report evidence
consistent with an end of life premium that those that did not
• Could graphical representations unintentionally lead to different
respondents interpreting the information in different ways?

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Discussion points: age and time-
related preferences
• Majority of studies included patient age in the study design
• Some evidence that respondents become less concerned about
the number of life years remaining when the patients in question
are relatively old
• Few studies mentioned time-related preferences; even fewer
attempted to control for them
• Could an observed preference for treating patients with short life
expectancy be driven by concern about how long those patients
have to ‘prepare for death’?

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Conclusions
• Primary finding is that the existing evidence is mixed
• Gaps in the evidence base and recommendations for
further research
• Test robustness of results by using multiple methods or
designs
• Understand the extent to which respondents agree with
policy implications or researchers’ interpretations of their
choices
• Further investigation of preferences regarding
‘preparedness’ would be welcomed

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To enquire about additional information and analyses, please contact Koonal
Shah at kshah@ohe.org
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