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!
Healthy Death 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
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….?
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
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?
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
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
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.
…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
Describe health states Have values from the general public Rosser Matrix QWB 15D HUI Mark 2 HUI Mark 3 EuroQol EQ-5D Validated Questionnaires
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