Patient values or values from the general public

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 19851787-99.
• Scores on a visual analogue scale
• 36 subjects in a wheelchair
• 36 normal matched controls
• Mean score
• Wheelchair 8.0
• Health controls 8.3

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
Whos 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

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