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;17:87-99.

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

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