1. 1 The Future of Quality of Life Assessment in Cost-Effectiveness Research Prof. Jan J. v. Busschbach, Ph.D. Erasmus MC Medical Psychology and Psychotherapy Viersprong Institute for studies on Personality Disorders

2. QoL in HTA: QALY

3. In the past, much criticism Cohen CB. Quality of life and the analogy with the Nazis. Journal of Medicine and Philosophy 8: 113-35, 1983.

4. Criticism remains 4 ….the strictly fascist essence of those QALYs (so-called Quality-Adjusted Life Years)…

5. But QALY rules… From 1980 till 2010: 7049 publications in PubMed

6. There is not yet an alternative…

7. Raad voor de Volksgezondheid en Zorg  Weight QALYs by severity of illness  QALYs determine “severity” 7

8. Value based pricing  Health Secretary Andrew Lansley  Measures "will help ensure better access for patients to effective drugs and innovative treatments on the NHS"  Like RvZ  Again adding severity  Adding Innovation  QALY still at the hart of the judgment  Severity and innovation both expressed terms of QALYs 8

9. Efficiency frontier  Germany  IQWiG  Still discussion  whether it is possible ‘in theory’ to make such value judgments, let alone in practice 9

10. Which measure?  Questionnaires  EQ-5D  HUI  SF-6D  Direct measures  TTO  Discrete choice  SG  VAS

11. Questionnaires  EQ-5D  Dominates health economics  Said to be insensitive  New 5 level version is on its way  SF-6D  Overtook HUI in popularity  Little support development  HUI  Little recent development  Expensive

12. Disease specific instruments  As validation methodology becomes cheaper…  Why not validate a disease specific instrument?  The big research question  Are values valid?  Are the values the same as with HUI, SF-6D etc  Narrow scope  Values are too high  Attention bias  Differences are too big

13. Bold-on instruments  Combine generic instruments with disease specific dimensions  “Bold-on” the disease specific dimension  Can solve the narrow scope  Absolute value level might be valid  Could avoid attention bias  Does it also avoid the attention bias?

14. Direct measures  Used to value health states in models  TTO dominates  Discrete choicecoming up  SGslips aside  VASnot in favor in health economics  WTPnever more than a promise

15. The big questions  TTO  Values below dead  Discrete choice  Is discrete choice valid within the QALY approach?  How to anchor in death – normal health scale TTO?

16. Care  QALY in care is disputed  But QALY is ok for big issues in care  No care = dead  QALY might not be sensitive  Care might be involve other aspects than health  For instance: does not measure autonomy  Same issues as in cure?  Disease specific instrument  Involve need and innovation

17. Discrete choice in care  New instrument for care  ICECAP  ASCOTT  Several other initiatives  What is the relation with QALY?  Why go for another scale? 17

18. Conclusion: Standardization  Questionnaires  Could merge to EQ-5D  But disease specific instruments might blur  Direct valuation  TTO seems to prevail, but not yet one methodology  Care  Just the start of development 18

19. Future questionnaires  CheapEQ-5DSF-6DHUI  SensitiveSF-6DHUIEQ-5D (3L)  Simple to useEQ-5DSF-6DHUI  Many translationsSF-6DEQ-5DHUI  Many value setsEQ-5DHUISF-6D  Will EQ-5D-5L dominate?  There must be room for more instruments…