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Patient values or values from the general public

Patient values or values from the general public. 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. “

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Patient values or values from the general public

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  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. 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

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

  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

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