1. Prof. Dr. Jan J.V. Busschbach
Measuring the “Q” in QALYs for cost-effectiveness: the EuroQol Group’s approach National EQ5D Symposium and Workshop 3 – 6 August, 2016 Penang, Malaysia.
Prof. Dr. Jan J.V. Busschbach
Erasmus MC, Rotterdam, The Netherlands
Section Medical Psychology and Psychotherapy
Department of Psychiatry
Conflict of Interest
Member of the EuroQol Group
Chair of the EuroQol Research Foundation

2. Quality Adjusted Life Years: QALYs
Example
Blindness
Quality of life value = 0.5
Life span = 80 years
0.5 x 80 = 40 QALYs
Most debate
0.00
1.00 X
0.5 x 80 = 40 QALYs
Life years 40 80 2 2

3. Uni-dimensional value
QALYs need a uni-dimensional value
Like the IQ-test measures intelligence
QALYs need a ratio or interval scale
Difference 0.00 and 0.80 must be 8 time higher than 0.10

4. Five methods…. have the pretention to measure interval…
Visual analog scale
Time trade-off
Standard gamble
Person Trade-off
Discrete Choice

5. QALY publications

6. Visual Analogue Scale From psychological research Main critique
Also called “category scaling”
Rescale from 0.00 to 1.00
Main critique
No guarantee ratio scale
Lower value then face value

7. Time Trade-Off (TTO) Wheelchair
With a life expectancy: 50 years
How many years would you trade-off for a cure?
Max. trade-off is 10 years
QALY(wheel) = QALY(healthy)
Y * V(wheel) = Y * V(healthy)
50 V(wheel) = 40 * 1
V(wheel) = .80
Main critique
Discounting effect
More complicated than VAS

8. Standard Gamble SG Wheelchair Life expectancy is not important here
How much are risk on death are you prepared to take for a cure?
Max. risk is 20%
wheels = (100%-20%) life on feet
V(Wheels) = 80% or .8

9. Problems Patients values tent to be too high
We rather have values from the general public
Time Trade-off is cumbersome

10. Patients values tend to be too high
Stensman
Scan J Rehab Med 1985;17:87-99.
Scores on a visual analogue scale
36 subjects in a wheelchair
36 normal matched controls
Mean score
Wheelchair: 8.0
Health controls: 8.3
Healthy
Death

11. Coping Medicine: Coping Is a good thing for patients…
Quality of life: Response shift
Psychology: Cognitive dissonance reduction
Economics: Preference drift
Is a good thing for patients…
….but it not handy in measurement

12. Should we have patient values?
In a normal market: the consumer values count
The patient seems to be the consumer
Thus the values of the patients….
If indeed health care is a normal market…
But is it….? 12

13. Health care is not a normal market….
Supply induced demands
Government control
Financial support (egalitarian structure)
Patient  Consumer
The patient does not pay
Consumer = General public
Potential patients are paying
Health care is an insurance market
A compulsory insurance market 13

14. Health care is an insurance market
Values of benefit in health care have to be judged from a insurance perspective
Who values should be used the insurance perspective? 14

15. Who determines the payments of unemployment insurance?
Civil servant
Knowledge: professional
But suspected for strategical answers
more money, less problems
identify with unemployed persons
The unemployed persons themselves
Knowledge: specific
General public (politicians)
Knowledge: experience
Payers 15

16. Who’s values (of quality of life) should count in the health insurance?
Doctors
Knowledge: professional
But suspected for strategical answers
See only selection of patient
Identification with own patient
Patients
Knowledge: disease specific
But coping
General public
Knowledge: experience
Payers
Like costs: the societal perspective 16

17. Time Trade-off is cumbersome
Can we not find a more simple way?

18. TTO validated questionnaires
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 X X X
22221 X X

19. Solvings problems Problems Solutions: Validated TTO questionnaires
Patients values tent to be too high
We rather have values from the general public
Time Trade-off is cumbersome
Solutions: Validated TTO questionnaires
No patient values involved
Given values from the general public
Easy to administer

20. The Rosser & Kind Index 20

21. Criticism on the Matrix
Sensitivity
only 30 health states
The unclear meaning of “distress”
The involvement of medical personnel
No clear way how to classify the patients
into the matrix
Only British values
The compression of states in the high values 21

22. Value compression 22

23. New initiatives Higher sensitivity (more then 30 states)
More and better defined dimensions
Values of the general public
A questionnaire…
to allow patients to ‘self classify’ themselves
An international standard
to allow international comparisons
That is at that time “Europe”
Better valuation techniques
Standard Gamble, Time Trade-Off, Visual Analogue Scale

24. EuroQoL Group First meeting 1987 Participants from
UK, Finland, Sweden, The Netherlands
A common core instrument
To allow international comparisons
To allow linking of international results
Instrument should be small
Suitable for sever ill patients
The emerging of high tech medicine, especially transplantation

25. The first EuroQol Higher sensitivity (more then 30 states)
More and better defined dimensions
6 dimensions
Mobility;
Daily activity and self care;
Work performance
Family and leisure performance
Pain/discomfort
Present mood
Other valuation techniques
Visual Analogue Scale

26. The first EuroQol Values of the general public A questionnaire
Values from general public
But also values from patients (!)
A questionnaire
to allow patients to ‘self classify’ themselves
A international standard
to allow international comparisons
That is at that time “Europe”

27. Validated Questionnaires
Most used at this moment
SF-6D
HUI Mark 2 & 3
EuroQol EQ-5D-3L & EQ-5D-5L
AQoL
Typical validation study
Time Trade-off
Involved a representative sample of the general population
N = [300…5.000]
Done per country

28. National value sets Because translations differs…
Values must follow translations
Because culture differ
Values must follow culture
National value sets EQ-5D
EQ-5D-3L
Belgium, Denmark, Europe, Finland, France, Germany, Japan, New Zealand, Netherlands, Singapore, Slovenia, Spain, UK, USA, Zimbabwe
EQ-5D-5L
England, Japan, Canada, Uruguay, Netherlands, China, Korea, Singapore, Indonesia

29. The EQ-5D-5L questionnaire Versi Bahasa Melayu untuk Malaysia

30. Valuation study Malaysia
Prof Dr Asrul Akmal Shafie
Universiti Sains Malaysia
Prof Dr Nan Lou
National University of Singapore
The EuroQol Group

31. Typical EuroQol Study EQ-5D-5L 1000 respondents general population
Representative for age, gender,
Using advanced quality control
Computer guided time trade-off interview
Specific training of interviewers
Online quality checks during research by the EuroQol office

32. First international comparisons in 1988 with EQ-6D and VAS

33. Does TTO differs?

34. Replication TTO in the UK

35. Positive TTO values differ little

36. Negative TTO values differ

37. Importance of quality control
TTO vulnerable for interviewer effects
Especially with negative values
Quality control avoids ad hoc modeling
UK from data to value set
> 1 year
Indonesian….
3 days
Credibility

38. Indirect utility assessment

39. Direct utility assessment39

40. Patient values included

41. EQ-5D as the reference case

42. NICE requests a QALY analysis
a strong preference for a single QoL instrument
Recommend EQ-5D
NICE methods guide 2008
But acknowledges that
EQ-5D data not always available
EQ-5D may not always be the appropriate measure.

43. Reference case In practice Deviations are allowed But….
In the UK, EQ-5D is the reference case
Demanded by NICE in health economic evaluation
Every drug assessed for reimbursement
Deviations are allowed
Must be motivated
But….
If motivation fails….
So EQ-5D is include most of the times

44. Other countries Reference case in other countries as well
Not as clear as in UK
In Netherlands EQ-5D has been made compulsory
Has propelled the EQ-5D
Most used in questionnaire in health economics

45. Why EQ-5D as reference? UK strong tradition in health economics
York University
York involved in the EuroQol Group
Massive grant to develop UK TTO value set
NHS
N = 3000

46. Pragmatic reasons The EQ-5D is short Is available in many languages
Can be done beside other questionnaires
Is available in many languages
EQ-5D-3L: 171 languages
EQ-5D-5L: 138
Cheap
Non commercial use is free
Most large companies have a subscription

47. EQ-5D was develop as a reference case
1988
In need of compatibility of research
To make European research efforts comparable
‘a basic common core of QoL Characteristics’
The European Common Core Group
Note: no ‘gold standard’
‘for use alongside more detailed condition specific […] measures’

48. EuroQol is noncommercial
Is not owned by some one….
No stocks
EuroQol Research Foundation
Money is put back in research
Malaysian validation study
In part financed by EuroQol

49. Part of the academic society
Can effort the questionnaire
Often used
Are allowed to further develop EQ-5D
In the Netherlands explicitly asked to help valuated
All important university complied
High acceptance in Academia

50. Most studied questionnaire
EQ-5D is not necessary the best
But we know in detail:
The good things
The bad things

51. Evidence on EQ-5D: some examples
Hearing Prostate Erectile dysfunction Schizophrenia Bipolar disorder Vision Breast reconstruction Depression and anxiety Some cancers Skin Personality disorder

52. Conclusion Malaysia… EQ-5D-5L will have a valued EQ-5D-5L in 2018
…is a good candidate to be a reference case