OHE’s Paula Lorgelly took part in the Future of Value: Insights from the Experts panel discussion, Indianapolis, on 1 March 2016. Paula presented a paper which discusses issues with going 'beyond quality adjusted life years (QALYs)' when valuing health care interventions. There are three dimensions to consider when going beyond QALYs: develop a better measure of health (e.g. one that could be condition-specific); use broader measures of benefit; consider a societal perspective (e.g. include productivity loss and carers’ effects). Paula’s presentation focused on utilising a broader measure of benefit, focusing on alternative such as the capability approach and subjective wellbeing measures. The panel was sponsored by Eli Lilly.

1. Beyond QALYs
A quantum leap forward or
a leap in the dark?
Assoc Prof Paula Lorgelly
Deputy Director

2. Future of Value: Beyond QALYs
Professional background
• Experience in both UK and Australia health care
systems
• (rigorous/rigid) HTA environments
• Member of PBAC ESC
• Cost effectiveness thresholds
• Societal willingness to pay or opportunity cost of
benefit forgone
• Budget impact assessment/constraints
• So much I could discuss ….

3. Future of Value: Beyond QALYs
Value judgements
• When assessing value for money, ask
• What constitutes benefit?
• How useful is it for informing decision making?
• Welfarist approach, monetary metric of benefit1
• Transport, energy, environment …
• But issues of applying contingent valuation
methodology to measure benefits of health
interventions
• Extra-welfarist approach, use non-utility information
in decision making, target health instead of utility1

4. Future of Value: Beyond QALYs
Health and QALYs
• Measure health or health related quality of life
(HRQoL) using multi-attribute utility instruments
(MAUIs)2
• EQ-5D, SF-36/6D, HUI, QWB
• Use societal preferences to convert reported health
profiles into values which we then use to estimate
QALYs given time in a health state
• QALYs offer a common metric for comparisons across
diseases
• Also (established) cost effectiveness thresholds
• But the QALY criticisms are many3

5. Future of Value: Beyond QALYs
Non health or beyond health
• Once the focus was on survival (overall or
progression free) and life extension
• Then came an interest in quality of life
• Medical intervention today goes well beyond health
• Genetic tests which offer information/reassurance4
• End-of-life care, palliative care, ‘a good death’5
• Increasing role of caregivers/carers and informal
care6
• Add to this the growing need to evaluate public
health/social care (cross-sectional) interventions7

6. Future of Value: Beyond QALYs
How do we assess value?
• Could use (and we do use) QALYs, but
• Most MAUIs focus on health related quality of life
which is generally generic
• To go beyond QALYs one could have8,9
• Better measure of health, disease/condition-specific,
EQ-5D bolt-ons10
• Broader measure of benefit
• Societal perspective, e.g. productivity losses and carer
effects

7. Future of Value: Beyond QALYs
Capability Approach
• Amartya Sen awarded the Nobel prize in economics,
199811
• When assessing quality of life, the object of the
assessment should be people’s capabilities, intended
as the real freedom that people have to live the life
they value
• A crucial normative argument that quality of life
should not be measured as opulence or utility and
should not be assessed using people’s preferences or
desires but should concern people’s capabilities
• the abilities to achieve those ‘beings and doings’ that
people have reason to value in life12

8. Future of Value: Beyond QALYs
Operationalising the CA
• Early work by Sen on the Human Development Index
• Wide adoption in development and gender studies
• Informed Tony Culyer’s contribution to the progress
of extra-welfarism and the subsequent development
of the QALY framework13
• Most recently operationalised as an outcome
measure14
• ICECAP suite of instruments
• ASCOT
• OCAP, OCAP-18, OxCAP-MH
• Targeted instrument development

9. Future of Value: Beyond QALYs
ICECAP suite of instruments15
• ICECAP-O for older people
• ICECAP-A for adults
• ICECAP-SCM for end of life care
• Additionally, Carers Experience Scale (CES)

10. ICECAP-A

11. ICECAP-SCM

12. Future of Value: Beyond QALYs
ASCOT instruments16
• Social Care Related Quality of Life, SCRQoL
• Number of instruments for use in different settings

13. User SCRQoL Domain Definition
Control over daily life The service user can choose what to do and when to do it,
having control over his/her daily life and activities
Personal cleanliness and comfort The service user feels he/she is personally clean and
comfortable and looks presentable or, at best, is dressed
and groomed in a way that reflects his/her personal
preferences
Food and drink The service user feels he/she has a nutritious, varied and
culturally appropriate diet with enough food and drink
he/she enjoys at regular and timely intervals
Personal safety The service user feels safe and secure. This means being
free from fear of abuse, falling or other physical harm and
fear of being attacked or robbed
Social participation and involvement The service user is content with their social situation,
where social situation is taken to mean the sustenance of
meaningful relationships with friends and family, and
feeling involved or part of a community, should this be
important to the service user
Occupation The service user is sufficiently occupied in a range of
meaningful activities whether it be formal employment,
unpaid work, caring for others or leisure activities
Accommodation cleanliness and comfort The service user feels their home environment, including
all the rooms, is clean and comfortable
Dignity The negative and positive psychological impact of support
and care on the service user's personal sense of
significance
ASCOT

14. Future of Value: Beyond QALYs
Capability values
• Both ICECAP and ASCOT employ best worst scaling,
BWS
• Authors argue choice approach elicits values for
capability/social care states, not preferences
• ICECAP values range from 1 full capability to 0 no
capability
• Not anchored on dead so cannot be used in a QALY
• ASCOT values range from 1 ideal SCRQoL to –0.19,
where 0 is dead (used a time trade off approach)
• ASCOT can be used in a QALY context – social care
QALYs

15. Future of Value: Beyond QALYs
Capability in HTA
• When assessing value for money, ask
• What constitutes benefit?
• How useful is it for informing decision making?

16. Future of Value: Beyond QALYs
Example – ADHD
• Attention-deficit/hyperactivity disorder (ADHD) can
be managed by helping children to develop
concentration and social skills, but in some case it
requires pharmacotherapy
• Lisdexamfetamine found to improve symptoms
(ADHD-RS-IV) and result in weight loss
• Considerable non-health benefits, evidence suggests
ADHD results in poor educational performance and
increased criminal activity
• A capability instrument could provide an estimate of
how treating/managing children with ADHD improves
their wellbeing, beyond just health improvements

17. Future of Value: Beyond QALYs
Example – diagnostic tests
• Diagnostic tests provide information primarily to
inform a treatment strategy which offers health
benefits
• But the information itself can be valuable to patients,
it might change behaviour and offer empowerment
• If the diagnostic is a genetic test, may offer
additional benefits to relatives, so by extension
valuable to the patient’s overall wellbeing

18. Future of Value: Beyond QALYs
Subjective Wellbeing
• Traditional welfarist view of the world where
individuals are regarded as the best judge of their
own conditions, and the aim of public policy is to
maximise the sum of everybody’s happiness (or
utility)18
• Different measures19
• experienced happiness
• evaluation of life, or life satisfaction
• However, evidence that life satisfaction and
happiness are not measuring the same concept20
• None-the-less attractive as they are relatively easy
to collect

19. Future of Value: Beyond QALYs
OECD21

20. Future of Value: Beyond QALYs
SWB in HTA
• When assessing value for money, ask
• What constitutes benefit?
• How useful is it for informing decision making?

21. Future of Value: Beyond QALYs
Examples – limited
• HTA applications are non-existent
• But we know Bhutan is happy!
• Wellbeing Valuation Approach, wellbeing is valued
using data on individual’s SWB from large-scale
surveys to assess how non-market goods or life
events such as unemployment or illness impact on
people’s life satisfaction22

22. Future of Value: Beyond QALYs
Decision makers beyond QALYs
• NICE social care guidance, states that when
measuring and valuing effects “‘QALYs or ‘social care
QALYs’ with parallel evaluation based on capability
measures where an intervention results in both
capability and health or social care outcomes’’ can be
used, and that the ‘‘ASCOT instruments may be used
as measures of social care quality of life and ICECAP
instruments may be used to measure capability’’
• Recent Dutch adoption of capability measures
(ICECAP) in their HTA guidance

23. Future of Value: Beyond QALYs
Quantum leap?
• Payne and Thompson neatly stated that the
“availability of other approaches to value benefit is a
necessary but not sufficient requirement for moving
beyond the QALY. It is not controversial to suggest
that the alternatives to the QALY should only be used
if they offer sufficient improvements to the existing
valuation metric’’22
• Limitations remain: What does the incremental cost
per unit of capability/SWB mean?

24. Future of Value: Beyond QALYs
To conclude
• Health gain is the most important driver (in the
health care system)
• But capturing benefit of a therapy has to go beyond
a simple measure of health gain
• Important to capture and evaluate the overall benefit
for the patient and/or society

25. Future of Value: Beyond QALYs
Questions?
Comments?
Controversies?

26. Future of Value: Beyond QALYs
References
1. Brouwer & Koopmanschap. On the economic foundations of CEA. Ladies and gentlemen, take your positions! Journal of Health Economics.
2000; 19: 439-59.
2. Richardson et al. Review and critique of health related multi attribute utility instruments. Monash University, Business and Economics,
Centre for Health Economics, 2011.
3. Mehrez & Gafni. Quality-adjusted life years, utility theory, and healthy-years equivalents. Medical Decision Making. 1989; 9(2): 142-149.
4. Grosse SD, Wordsworth S, Payne K. Economic methods for valuing the outcomes of genetic testing: beyond cost-effectiveness analysis.
Genetics in Medicine. 2008 Sep 1;10(9):648-54.
5. Round (ed). Care at the End of Life: an economic perspective. Springer: 2016.
6. Van Exel et al. The invisible hands made visible: recognizing the value of informal care in healthcare decision-making. Expert Review of
Pharmacoeconomics & Outcomes Research. 2008; 8(6): 557-61.
7. Lorgelly et al. Outcome measurement in economic evaluations of public health interventions: a role for the capability approach?.
International Journal of Environmental Research and Public Health. 2010; 7(5): 2274-89.
8. Payne K, J Thompson A. Economics of pharmacogenomics: rethinking beyond QALYs?. Current Pharmacogenomics and Personalized
Medicine (Formerly Current Pharmacogenomics). 2013 Sep 1;11(3):187-95.
9. http://www.mrc.ac.uk/funding/how-we-fund-research/highlight-notices/improving-cross-sector-comparisons-beyond-qaly/
10. Yang et al. An exploratory study to test the impact on three "bolt-On" items to the EQ-5D. Value in Health, 2015; 18(1): 52-60.
11. Sen. 1985. Commodities and Capabilities, Elsevier: New York.
12. Sen. 1993. Capability and well-being. In: Nussbaum, MC, Sen A (eds.), The Quality of Life. Claredon Press: Oxford.
13. Coast, Smith, Lorgelly. Welfarism, extra-welfarism and capability: the spread of ideas in health economics. Social science & medicine. 2008
Oct 31;67(7):1190-8.
14. Culyer. 1990. Commodities, characteristics of commodities, characteristics of people, utilities, and the quality of life, Routledge: London.
15. Lorgelly. Choice of Outcome Measure in an Economic Evaluation: A Potential Role for the Capability Approach. PharmacoEconomics. 2015
Aug 1;33(8):849-55.
16. http://www.birmingham.ac.uk/research/activity/mds/projects/HaPS/HE/ICECAP/index.aspx
17. http://www.pssru.ac.uk/ascot/
18. Stiglitz. 2009. Progress, what progress. OECD Observer 272.
19. Dolan et al. 2008. Do we really know what makes us happy? A review of the economic literature on the factors associated with subjective
well-being. Journal of Economic Psychology 29: 94–122
20. Kahneman & Deaton. 2010. High income improves evaluation of life but not emotional well-being. Proceedings of the National Academy of
Sciences 107: 16489–16493.
21. OECD. 2013. OECD Guidelines on Measuring Subjective Well-being.
22. Fujiwara. 2013. A General Method for Valuing Non-market Goods Using Wellbeing Data: Three-stage Wellbeing Valuation, Centre for
Economic Performance: London School of Economics and Political Science.
23. Payne & Thompson. Economics of pharmacogenomics: rethinking beyond QALYs? Curr Pharmacogenomics Pers Med. 2013;11(3):187–95.