1. Is healthcare any good for patients? Measuring health outcomes using EQ-5D Professor Paul Kind Principal Investigator Outcomes Research Group Centre for Health Economics University of York England

2. Health care Designed / delivered with the intention of altering the “natural” health status of patients over time Relieving pain, suffering Prolonging (enabling) life Easing process of dying Cure (sometimes)

3. Hippocratic Oath : First, do no harm Fundamental question : how do you know if you are helping / harming the patient ? You need to know –does treatment CHANGE anything ? –what is the DIRECTION of change ? –what is the MAGNITUDE of change ?

4. Health care intervention No Symptomatic relief, cure, palliation ? Yes Problem

5. Measuring health outcomes the biomedical model (a) [ FEV 1 ] t0 - [ FEV 1 ] t1  FEV 1 (b) [ health] t0 - [ health ] t1  health status there is a calibrated test procedure for (a) what do we use for (b) ?

6. Outcome measures 'Classical' indicators Survival rates Readmission rates Symptom counts Employment status Days lost through sickness Clinical parameters

7. Grading angina severity New York Heart Association Grade I ordinary physical activity does not cause undue fatigue, palpitation or anginal pain Grade II comfortable at rest. Ordinary physical activity results in fatigue, palpitation, dyspnoea or anginal pain Grade III comfortable at rest. Less than ordinary physical activity causes fatigue, palpitation, dyspnoea or anginal pain Grade IV inability to carry on physical activity without discomfort. Symptoms of cardiovascular insufficiency or the anginal syndrome may be present even at rest

8. Karnofsky Performance Scale

9. FACT-L

10. Health-related quality of life a specialised measure of outcome Health-related quality of life What are the health outcomes ? EQ-5D

11. The EuroQoL Group Set up in 1987 by a multidisciplinary group of researchers concerned with EVALUATION in health and health care – Clinicians – Health economists – Others (sociology, psychology …)

12. The EuroQoL Group Founders Finland Netherlands (Norway) Sweden UK Extended network Argentina Canada China Denmark Germany Greece Hungary Italy Japan Korea New Zealand Portugal Russia Slovenia Spain Taiwan USA.. Poland ?

13. So.. what is EQ-5D ? A generic measure of health status (health-related quality of life) capable of being represented as a single index Health is defined in terms of 5 dimensions - mobility - self care - usual activity - pain / discomfort - anxiety / depression Each dimension is divided into 3 levels - none - some - extreme

14. What is EQ-5D ? A generic, single index measure of health status Based on 5 dimensions Mobility Self-Care Usual Activity Pain / Discomfort Anxiety / Depression Defines a total of 3 5 = 243 health states Mobility Self-Care Usual Activity Pain / Discomfort Anxiety / Depression Health state

15. Mobility Self-care Pain / discomfort Anxiety / depression Health state Usual activities For example : no problems in walking about (1) some problems washing self (2) some problems with usual activity (2) no pain or discomfort (1) moderately anxiety or depression (2) State 12212

16. In general we know NOTHING about the order or values of EQ-5D health states There is a logical ordinal relationship between some states –For example 11111 is logically better than 33333 –But what is the distance between these states ?

17. Profile A : 1 1 2 2 3Profile B : 1 1 3 2 2 Does moving from state A to state B constitute a patient benefit ? If so, then by how much?

18. Shared objective : Valuing health Needed a simple method Self-administered Capable of being used in population surveys Relatively quick Able to produce cardinal values

19. Valuation method(s) EuroQoL Group standard –Visual analogue scale rating using a vertical 20cm scale –Range 0 – 100 corresponding to “worst imaginable” and “best imaginable” health Individual experimentation –Time Trade-Off (York MVH Project) –Ranking –Paired comparisons –Standard Gamble

20. Health state E Health state F 3 3 3 3 3 Health state H VAS rating of EQ-5D health states Health state A Health state C 1 1 1 1 1 Health state D

21. Population preference weights Profile A : 1 1 2 2 3 Profile B : 1 1 3 2 2

22. 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 I have no problems with performing my usual activities  (e.g. work, study, housework, family or leisure 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   For each group of statements please indicate the one that best describes your health today  Please tick one box for each group of statements.

24. 100 0 Worst imaginable health Best imaginable health 10 60 50 40 30 20 90 80 70 TThink about how good or bad your own health is today This scale may help. The best health you can imagine is marked 100 and the worst health you can imagine is marked 0 Please write in the box below, the number between 0 and 100 that you feel best shows how good your health is today Your own health today

26. Page 3 : Patient Perspective

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 Page 2 : Societal Perspective 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 ?

28. How are EQ-5D data presented ? As a profile –based on reported level of problem on each dimension As a health state As a weighted index –based on values of the general public As self-rated health status EQ-5D profile health state weighted index self-rated health status Part IPart II

29. Some examples

30. Frequency of reported problems by age group in UK population

31. Population “norms” mean EQ-5D index Source : Health Survey for England, 1996

32. EQ-5D index by age / smoking behaviour

33. EQ-5D for GP clinic attenders

34. Primary care clinic attendees EQ-5D profile by diagnostic group

36. Rheumatoid arthritis Functional Class I.. complete functional capacity –ability to carry out all normal activities II.. adequate for normal activities –despite discomfort or limited motion at 1 or more joints III.. limited functional capacity –only little or none of duties of normal occupation or selfcare IV.. incapacitated –largely or wholly bed-ridden or confined to wheelchair; little or no selfcare

37. EQ-5D index by Functional Class rheumatoid arthritis patients

38. EQ-5D in treatment of HIV/AIDS

39. Where are we now ? Science Likely to increase number of response levels from 3 to 5 Investigating a “child-friendly” version of EQ-5D Computer-based valuation and self- assessment methods Electronic data capture – web based technologies

40. 5-level or 3-level ? One suggested modification to existing 3-level descriptive system Place unmarked level between existing levels

41. Where are we now ? Application Nearly 100 language versions available Worldwide take-up with many normative population studies Widespread incorporation in clinical studies that involve economic evaluation Major head:head study in US of the leading generic HrQoL measures

42. ends Paul Kind : pk1@york.ac.uk EuroQoL Group : http://www.euroqol.org