1 Patient values or values from the general public

2 The clinical perspective  Quality of life is subjective…..  “Given its inherently subjective nature, consensus was quickly reached that quality of life ratings should, whenever possible, be elicited directly from patients themselves. “ (Neil Aaronson, in B. Spilker: Quality of life and Pharmacoeconomics in Clinical Trails, 1996, page 180)  …therefore ask the patient!

3 A problem in the patient perspective….  Stensman  Scan J Rehab Med 1985;17:  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

4 The economic perspective  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….?

5 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

6 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?

7 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  But suspected for strategical answers  General public (politicians)  Knowledge: experience  Payers

8 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 suspected for strategical answers  But coping  General public  Knowledge: experience  Payers  Like costs: the societal perspective

9 The general public should be informed…  Valuing without knowledge makes no sense  Thyroid Eye Disease  Give description of the disease A patient with bilateral thyroid eye disease with upper lid retraction and exophthalmos.

10 …or use 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

11 Validated Questionnaires  Describe health states  Have values from the general public  Rosser Matrix  QWB  15D  HUI Mark 2  HUI Mark 3  EuroQol EQ-5D

12 Different perspective belong to different research questions  Health economics  Societal perspective General public  Medical decision making  Patients perspective  Epidemiology  Doctors perspective Global Burden of Disease