1. “Introduction to Patient Preference Methods used for QALYs” Presented by: Jan Busschbach, PhD, Chair Section Medical Psychology and Psychotherapy, Department of Psychiatry, Erasmus MC, Rotterdam The Netherlands Saturday, 2 November 2013

2. Utility Measurements Preference-based Techniques  Prof. Dr. Jan J.V. Busschbach  Erasmus MC  Department for Medical Psychology and Psychotherapy  Saturday, 2 November 2013: 14:00 - 18:00 2

3. Program before the break  14:00 – 14:30 Introduction + email questions  (Presentation 1)  14:30 – 15:30 Indirect utility measurement  Lecture: Introduction EQ-5D, HUI and SF-36 in QALYs (Presentation 2)  Exercise: Indirect utility measurement (Exercise 1)  Lecture continued: EQ-5D, HUI and SF-36 in QALYs (Presentation 2 continued)  The difference between patient and social perspective (Presentation 3)  15:30 – 16:00 Direct utility measurement  Lecture: Direct utility measurement: The validity of Standard Gamble, Time Trade-Off and Visual Analogue Scale (Presentation 4)  16:00 – 16:15 Break 3

4. Program after the break  16:15 – 17:00 Direct utility measurement  Exercise: Direct utility measurement (Exercise 2)  Discussion: which instrument when to use?  17:00 – 17:15 Disease specific utility measurement  Lecture: Disease specific instruments for QALY-analysis + Person Trade-Off (Presentation 5)  17:15 – 17:45 Cultural differences  (Presentation 7)  17:45 – 18:00 Round up 4

5. 5 7000 Citations in PubMed

6. Identification of major problems  Issues emailed by participants  What topics in quality of life research are most relevant/interesting for you and/or your work? 6

7. Health Economics  Comparing different allocations  Should we spent our money on Wheel chairs Screening for cancer  Comparing costs  Comparing outcome  Outcomes must be comparable  Make a generic outcome measure 7

8. Outcomes in health economics  Specific outcome are incompatible  Allow only for comparisons within the specific field Clinical successes: successful operation, total cure Clinical failures: “events” “Hart failure” versus “second psychosis”  Generic outcome are compatible  Allow for comparisons between fields Life years Quality of life  Most generic outcome  Quality adjusted life year (QALY) 8

9.  Example  Blindness  Time trade-off value is 0.5  Life span = 80 years  0.5 x 80 = 40 QALYs Quality Adjusted Life Years (QALY) 9 0.00 1.00 X Life years 40 80 0.5 x 80 = 40 QALYs

10. Area under the curve

11. Which health care program is the most cost-effective?  A new wheelchair for elderly (iBOT)  Special post natal care 11

12. www.ibotnow.com 12 SegwayDean Kamen

13. Which health care program is the most cost-effective?  A new wheelchair for elderly (iBOT)  Increases quality of life = 0.1  10 years benefit  Extra costs: $ 4,000 per life year  QALY = Y x V(Q) = 10 x 0.1 = 1 QALY  Costs are 10 x $3,000 = $30,000  Cost/QALY = 40,000/QALY  Special post natal care  Quality of life = 0.8  35 year  Costs are $250,000  QALY = 35 x 0.8 = 28 QALY  Cost/QALY = 8,929/QALY 13

14. QALY league table 14

15.  QALYs are measured in an invalid way  Life years is not the problem, thus…  It must be the validity of quality of life assessment…  One should not use cost effectiveness  Often referred to as ‘ethics’ Two points of critique 15

16. 16 CB 0.0 1.0 Utility of Health Eric Nord: Egalitarian concerns AB

17. Burden as criteria 17 Pronk & Bonsel, Eur J Health Econom 2004, 5: 274-277

18. 80 0 ABC Levensjaen Costs/QALY as indicator of solidarity 18 60 40 20 € 50.000 € 30.000 € 40.000

19. Costs/QALY versus Burden of disease 19 € 80.000 € 60.000 € 40.000 € 20.000 € 0 Burden of disease X X X X X

20. Dutch Council for Public Health and Health Care (RvZ, 2006) 20

21. Burden of disease: QALY lost = DALY (Disability adjusted life year) DALY QALY

22. Burden of disease expressed as “QALY lost” = DALY  Disability adjusted life years  The inverse of QALY  Used by the WHO  Expresses burden of disease  Measure of priority  More burden, more investment  QALY lost (DALY) = Measure of solidarity 22

23. QALY: both for effectiveness and solidarity  Evaluations assess cost-effectiveness in term of cost/QALY  But many decisions can not be explained by cost/QALY  Explanation in terms of fairness  People disagree with distributional implications of QALY maximisation  Fairness is burden of disease  Burden of disease is QALY lost (DALY) 23

24. QALY debate  Fairness is the issue in the QALY debate  QALY measurement is the straw man  Complex metric discussion  QALYs are needed to operationalize fairness  Most debate about quality of life assessment  That debate = rest of the course 24

25. Most debate about the QoL estimates  Unidimensional QoL  In QALY we need a unidimensional assessment of Quality of life  Rules out multidimensional questionnaires  SF-36, NHP, WHOQOL 25

26. Direct utility assessment  SG, TTO, PTO, VAS 26

27. Indirect utility assessment  HUI, EQ-5D, AQoL, 15D, Rosser index 27 MOBILITY  I have no problems in walking about  I have some problems in walking about  I am confined to bed SELF-CARE  I have no problems with self-care  I have some problems washing or dressing myself  I am unable to wash or dress myself USUAL ACTIVITIES (e.g. work, study, housework family or leisure activities)  I have no problems with performing my usual activities  I have some problems with performing my usual activities  I am unable to perform my usual activities PAIN/DISCOMFORT  I have no pain or discomfort  I have moderate pain or discomfort  I have extreme pain or discomfort ANXIETY/DEPRESSION  I am not anxious or depressed  I am moderately anxious or depressed  I am extremely anxious or depressed