What does the public think about assigning priority to end-of-life treatment? In this presentation, OHE's Koonal Shah describes the results of research intended to tease out both preferences and, where possible, the reasoning behind them. The findings may surprise some -- for example, that priority is not given to end-of-life treatments when the treatments they would supplant offer greater health gains.
Valuing Health at the End of Life: Defining Public Preferences
1. Valuing Health at the End of Life
A Stated Preference Discrete Choice Experiment
Koonal Shah
Heath Economics Research Centre Seminar Series
University of Oxford ⢠21 January 2014
2. Study team and note on funding
⢠This study is a collaboration with Allan Wailoo and Aki
Tsuchiya (both University of Sheffield)
⢠The study was funded by the National Institute for Health
and Care Excellence (NICE) through its Decision Support
Unit
⢠The views, and any errors or omissions, expressed in this
presentation are those of the authors only
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3. NICE end-of-life criteria
Criteria that need to be satisfied for NICEâs supplementary
end-of-life policy to apply are currently as follows:
C1
The treatment is indicated for patients with a short
life expectancy, normally less than 24 months
C2
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
C3
The treatment is licensed, or otherwise indicated for,
small patient populations
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4. NICE end-of-life criteria (2)
⢠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 little
scientific evidence supports this premise
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5. Overview of project
Study 1: Exploratory study
â˘
â˘
â˘
Aim: to pilot an approach to eliciting priority-setting preferences
Aim: to explore the rationales underpinning peopleâs stated preferences
Small scale (n=21); convenience sample; face-to-face interviews
Study 2: Preference study
â˘
â˘
â˘
Aim: to test whether there is public support for giving priority to end-of-life
treatments
Aim: to validate the approach and worth of conducting a large scale study
Medium scale (n=50); representative sample; face-to-face interviews
Study 3: Discrete choice experiment
â˘
â˘
â˘
Aim: to examine peopleâs preferences regarding end of life more robustly
Aim: to examine the extent to which people are willing to sacrifice overall
health in order to give priority to end-of-life treatments
Large scale (n=3,969); representative sample; web-based survey
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6. Scenario 1
Both patients are same age today (Time=0)
Time
(years)
0
1
2
3
4
5
6
7
8
9
10
11
Patient A
Patient B
denotes time in full quality of life
denotes life extension (at full quality of life) achievable from treatment
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7. Scenario 2
Patient B is 9 years older than patient A today
Time
(years)
0
1
2
3
4
5
6
7
8
9
10
11
Patient A
Patient B
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8. Scenario 3
Both patients are same age today
Time
(years)
-9
-8
-7
-6
-5
-4
-3
-2
-1
0
1
A
B
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2
9. Scenario 4
Both patients are same age today (30 years old)
Time
(years)
0
1
2
A
B
denotes life extension (at 50% quality of life) achievable from treatment
denotes improvement from 50% quality of life to full quality of life
achievable from treatment
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10. Scenario 5
Both patients are same age today (70 years old)
Time
(years)
0
1
2
A
B
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11. Scenario 6
Patient B is 9 years older than patient A today
Time
(years)
0
1
2
3
4
5
6
7
8
9
10
A
B
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12. Findings from preliminary studies
⢠Elicitation approach found to be feasible
⢠No consensus set of preferences
⢠Majority wished to give priority to the end-of-life patient, but a
sizeable minority expressed the opposite preference
⢠âNo preferenceâ rarely expressed
⢠Preference for treatments that improve quality of life
⢠Preferences appear to be driven by how long patients have known
about their illness (i.e. how long they have to âprepare for deathâ)
⢠People are happy to prioritise based on characteristics of
patients/disease/treatment when gains to all patients are equal in
size ⌠next step is to understand the extent to which they would
sacrifice health gain to pursue equity objectives
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13. DCE study
⢠DCEs elicit peopleâs preferences based on their stated
preferences given hypothetical choices
⢠Surveys comprise several âchoice setsâ, each containing
competing alternative âprofilesâ described using defined
âattributesâ and a range of attribute âlevelsâ
⢠Respondentsâ choices between these profiles are analysed
to estimate the contribution of the attributes to overall
utility
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14. Attributes and levels
Attribute
Unit
Levels
Life expectancy without treatment
months
3, 12, 24, 36, 60
Quality of life without treatment
%
50, 100
Life expectancy gain from treatment
months
0, 1, 2, 3, 6, 12
Quality of life gain from treatment
%
0, 25, 50
â˘
Concept of â50% healthâ was explained as follows:
âSuppose there is a health state which involves some health
problems. If patients tell us that being in this health state for
two years is equally desirable as being in full health for one
year, then we would describe someone in this health state as
being in 50% healthâ.
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15. Study design
⢠Forced choices (no âneither A nor Bâ option)
⢠Generic descriptions of patients, illnesses and treatments
⢠Steps taken to avoid bias due to task order or possibility of
respondents reverting to default choices
⢠10 standard DCE tasks, followed by two âextension tasksâ
designed specifically to explore whether respondentsâ
choices are influenced by information about how long the
patients have known about their illness
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18. Web-based surveys
Pros
â˘
â˘
â˘
â˘
â˘
Can recruit a vey large
sample quickly and cheaply
Avoids interviewer bias
Survey highly customisable â
e.g. randomisation
procedures
Quality control procedures
can be put into place
Any less likely to be
representative than other
modes of administration?
Cons
â˘
â˘
â˘
â˘
â˘
No guarantee that
respondents have read or
understood instructions
Concerns about effort and
engagement
High level of drop out
Limited debriefing
opportunity
Concerns about
representativeness of sample
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20. Background characteristics (2)
#
963
3,006
Household composition
With children
Without children
Education
No education beyond minimum school leaving age
Education beyond minimum school leaving age; no degree
Education beyond minimum school leaving age; degree
Self-reported general health level
Very good
Good
Fair
Poor
Very poor
Experience of close friends or family with terminal illness
Yes
No
Question skipped by respondent
%
24
76
889
1,244
1,836
22
31
46
1,008
1,958
770
210
23
25
49
19
5
1
2,689
1,197
83
68
30
2
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21. Results
Best fitting model included main effects plus three
interactions:
⢠LE without treatment against LE gain
â
Rationale: small gains in life expectancy may be increasingly
important when life expectancy without treatment is short
⢠LE without treatment against QOL gain
â
Rationale: whether a quality of life improvement or a gain in life
expectancy is preferred may depend on life expectancy without
treatment
⢠LE gain against QOL gain
â
Rationale: the important of a gain in life expectancy may
depend on whether it is accompanied by a quality of life
improvement
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23. Transforming into predicted probabilities
⢠Following the approach used by Green and Gerard*
we calculated the relative predicted probabilities for
all of the 110 profiles
⢠This allows us to compare the profiles that are likely
to be most preferred overall with those that are
likely to be least preferred overall
⢠The predicted probability of alternative i being
chosen from the complete set of alternatives
(j=1,âŚ,J) is given by:
đđđđđđ =
đđ đđ đđđđ
đđ
âJ
đđ đđđđ
đđ=1
đđ = 1, ⌠, J
* Green, C. and Gerard, K., 2009. Exploring the social value of health care interventions: a
stated preference discrete choice experiment. Health Economics, 18(8), pp. 951-976.
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24. Estimated utility score and predicted
probability of choice for all profiles
Rank
- best
fitting
model
Rank â
main
effects
model
LE without
treatment
(mths)
QOL without
treatment
(%)
LE gain
(mths)
QOL gain
(%)
Utility
Prob.
Cumul.
Prob.
-
-
60
36
24
3
12
3
-
50
50
50
50
50
100
-
12
12
12
12
12
12
-
50
50
50
50
50
0
-
4.17809
4.08461
4.04235
3.95938
3.74493
3.61116
0.0155
0.0154
0.0153
0.0152
0.0148
0.0145
0.0155
0.0309
0.0462
0.0614
0.0762
0.0908
0.0029
0.0028
0.0028
0.0026
0.0025
0.9870
0.9898
0.9926
0.9952
0.9977
110
108
24
50
1
0
0.0023
1.0000
1
2
3
4
5
6
105
106
107
108
109
1
2
3
5
4
20
107
109
110
104
94
36
12
3
60
3
50
50
50
50
50
1
1
1
1
0
0
0
0
0
25
-
0.24171
0.18955
0.18553
0.13213
0.06320
0.01452
-
-
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25. Levels of QALYs without treatment /
gains associated with all 110 profiles
6
5
QALYs
4
3
2
1
0
0.0023 0.0040 0.0055 0.0062 0.0072 0.0085 0.0100 0.0112 0.0120 0.0130 0.0140
-1
Standardised predicted probability of being chosen
QALY without
QALY gain
Linear (QALY without)
Linear (QALY gain)
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26. Most and least preferred profiles
LE
without
treatment
(mths)
QOL
LE gain
without
(mths)
treatment
(%)
QOL gain
(%)
QALYs
QALYs
without
gained
treatment
27
55
11
38
1.14
1.76
55 most
preferred
27
57
7
31
1.27
1.22
55 least
preferred
27
65
2
10
1.49
0.29
10 least
preferred
28
50
1
3
1.18
0.06
10 most
preferred
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27. Subgroup analysis
⢠We defined a selection of respondent subgroups whose
choices may be expected to differ from those of the rest of
the sample
â˘
Respondents with experience of close friends or family with
terminal illness
â˘
Respondents with responsibility for children
â˘
Respondents who voluntarily left open-ended comments
â˘
Respondents who completed the survey unusually quickly
⢠We found no substantial differences between the results
for any of these subgroups and those for the full sample
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28. Categorising according to âchoice strategyâ
Number (%) of respondents whoâŚ
% choices made
according to this
strategy
never followed this
strategy
sometimes followed
this strategy
always followed this
strategy
Choose patient with
larger QALY gain
0.75
1 (0.0%)
3,530 (88.9%)
438 (11.0%)
Choose patient with
larger LE gain
0.69
20 (0.5%)
3,405 (85.8%)
544 (13.7%)
Choose patient with
fewer QALYs without
treatment
0.47
182 (4.6%)
3,701 (93.2%)
86 (2.2%)
Choose patient with
less LE without
treatment
0.45
355 (8.9%)
3,434 (86.5%)
180 (4.5%)
Choice strategy
â˘
â˘
Multinomial logit regressions used to identify driving factor(s) behind
respondentsâ membership in the subgroup âalways / never choose patient
with fewer QALYs without treatmentâ
Marginal effects of age and health satisfaction were found to be
statistically significant, but both are small in practical terms
â˘
As age increases, the probability of always choosing the patient with fewer
QALYs without treatment decreases, but even a 30-year increase in age would
not be sufficient for a 1% decrease in this probability
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29. Extension tasks
⢠Extension tasks showed that including information about
the amount of time that patients have known about their
prognosis has a clear impact on preferences
⢠Holding everything else constant, respondents are less
likely to choose to treat a patient who has know about
their illness for two years than if the patient has only just
found out about their illness
⢠Caveat: focusing effect may exaggerate importance
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30. Extension tasks (2)
â˘
The above figure shows the impact on choices of providing information on
how long patients have known about their illness, summed across all 16
extension tasks
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31. Summary of findings
⢠Choices driven by size of health gain
⢠Concern about the extent to which the patient is at the
end of life appears to have a negligible effect
⢠Overall view seems to be that giving higher priority to
those who are worse off is desirable only if the gains from
treatment are substantial
⢠No evidence of public support for giving higher priority to
end of life treatments than to other types of treatments if
the health gains offered by the treatments being âdeprioritisedâ are larger than those offered by the end of life
treatments
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32. Caveats and limitations
⢠Small range of scenarios covered â all involve poor
prognoses (some people might consider 5 years to be âend
of lifeâ)
⢠Does not necessarily refute evidence elsewhere in the
literature that people wish to pursue equity concerns
⢠Great deal of preference heterogeneity
⢠Limited opportunities for feedback and debriefing â cannot
know for certain the extent to which the choice data truly
reflect respondentsâ beliefs and preferences (or whether
there were adopting heuristics)
⢠Framing effects clearly exist in stated preference studies
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33. About OHE
To enquire about additional information, please contact Koonal Shah at kshah@ohe.org
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