Patient values or
values from the general public
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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!
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Patient values count….
 […]
the best way to do this, the technology, is a
patient-based assessment. They report, they
evaluate, they tell you in a highly standardized
way, and that information is used with the clinical
data and the economic data to get the best value
for the health care dollar.”
 John Ware
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A problem in the patient perspective….
 Stensman
Healthy
 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
Death
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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….?
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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
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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

General public
 Knowledge: disease specific
 But suspected for strategical answers
 But coping
 Knowledge: experience
 Payers
 Like costs: the societal perspective
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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.
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…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
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Validated Questionnaires
 Describe
health states
 Have values from the general public
 Rosser Matrix
 QWB
 15D
 HUI Mark 2
 HUI Mark 3
 EuroQol EQ-5D
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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
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