Quality of life “…. Health is physical, mental and social well-being and not merely the absence of disease or infirmity...” World Health Organization,

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1 VAS, SG, TTO and PTO Measuring quality of life An Interactive Introduction

2 Quality of life “…. Health is physical, mental and social well-being and not merely the absence of disease or infirmity...” World Health Organization, 1947 Extending health to well-being: Quality of life What is the definition of quality of life?

3 Many definitions Quality of life is the degree of need and satisfaction within the physical, psychological, social, activity, material and structural area (Hörnquist, 1982). Quality of life is the subjective evaluation of good and satisfactory character of life as a whole (De Haes, 1988). Health related quality of life is the subjective experiences or preferences expressed by an individual, or members of a particular group of persons, in relation to specified aspects of health status that are meaningful, in definable ways, for that individual or group (Till, 1992). Quality of life is a state of well-being which is a composite of two components: 1) the ability to perform everyday activities which reflects physical psychological, and social well-being and 2) patient satisfaction with levels of functioning and the control of disease and/or treatment related symptoms (Gotay et al., 1992). An individual’s perception of their position in life in the context of the culture and values systems in which they live and in relation to their goals, expectations, standards and concerns (WHO Quality of life Groups, 1993).

4 No clear definition Researchers are free to choose
The notion of measuring the quality of life could include the measurement of practically anything of interest to anybody. And, no doubt, everybody could find arguments supporting the selection of whichever set of indicators to be his choice… Andrews & Withey, 1976, page 6

5 No clear definition because…
Different origins of research Clinical decision making Does the patient benefit from the treatment? Epidemiology (public health) what is the morbidity of the population? Health economics Is it worth the money?

6 Common items in definitions:
It is not the doctor who reports 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. “ (Aaronson, in B Spilker (Ed): Quality of life and Pharmacoeconomics in Clinical Trails, 1996, page 180) Reports between proxies and patients vary.

7 Common items in definitions:
Health related Multidimensional Physical, psychological, social Questionnaires Standardize questions and response Reproducible results: sciences Quantify subjectivity Operational defined Like IQ and temperature.

8 How to measure quality of life form a clinical point of view?
Choose items Are you able to walk one kilometer ? Do you feel depressed ? Choose response mode Binary yes / no Multiple (Likert) yes / at bid / hardly / no Continuous (Visual Analogue Scale) Always ————X—— Never Combine items to dimensions of quality of life Sum up the items belonging to one dimension Rescale sum on a scale from 0 to 100

9 Items to value Health state Patient

10 Uni-dimensional value
QALYs need a uni-dimensional value Like the IQ-test measures intelligence QALYs need a ratio or interval scale Difference 0.00 and 0.80 must be 8 time higher than 0.10 Five popular methods have these pretensions Visual analog scale Time trade-off Standard gamble Person Trade-off Discrete Choice

11 Visual Analogue Scale From psychological research Main critique
Also called “category scaling” Rescale from 0.00 to 1.00 Main critique No guarantee ratio scale Lower value then face value

12 Time Trade-Off (TTO) Wheelchair
With a life expectancy: 50 years How many years would you trade-off for a cure? Max. trade-off is 10 years QALY(wheel) = QALY(healthy) Y * V(wheel) = Y * V(healthy) 50 V(wheel) = 40 * 1 V(wheel) = .80 Main critique Discounting effect More complicated than VAS

13 Standard Gamble (SG) Wheelchair
Life expectancy is not important here How much are risk on death are you prepared to take for a cure? Max. risk is 20% wheels = (100%-20%) life on feet V(Wheels) = 80% or .80 Main critique More complicated than VAS and TTO Risk aversion

14 Health economists prefer TTO/SG
Visual analogue scale No trade-off: no relation to QALY No interval proportions Standard Gamble / Time Trade-Off Trade-off: clear relation to QALY Interval proportions

15 Values differ, but differences are often constant
N = 103 students

16 100 persons additionally 1 healthy year
Person Trade-Off Values between patients Not ‘within’ a patient like VAS V(Q) = A / B For instance: V(Q) = 100/300 V(Q) = 0.33 ?? persons 1 year free from disease Q 100 persons additionally 1 healthy year

17 100 persons additionally 1 healthy year
Person Trade-Off (PT0) Values between patients Not ‘within’ a patient like SG, TTO and VAS For instance: 300 V(Q) = 100 V(Full Health) 300 V(Q) = 100 * 1.00 V(Q) = 0.33 ?? persons 1 year free from disease Q 100 persons additionally 1 healthy year

18 Incorporation of solidarity
Values between patients Not ‘within’ a patient like SG, TTO and VAS Suggested for health priority setting Burden of Disease project WHO Chris Murray, Eric Nord

19 PTO gives low values

20 Questionable psychometrics
Paul Kind: If we look at TTO and PTO... we see that one of them is wrong If we look at PTO alone... We still see that one of them is wrong... PTO is not a quick fix

21 First markers WHO look better

22 Smoothing by consensus
King CH (2008) Asymmetries of Poverty: Why Global Burden of Disease Valuations Underestimate the Burden of Neglected Tropical Diseases. PLoS Negl Trop Dis 2(3): e209.

23 Replication PTO Stouthard et al. Eur J Public Health 2000; 10: 24-30

24 PTO uses calibrated VAS

25 Vos T, et al., 1999

26 Essink-Bot et al., Cross-national comparability of burden of disease estimates: the European Disability Weights Project. Bull World Health Organ. 2002;80(8):

27 Validity of PTO Health economists have a complex relation with PTO
Unclear incorporation of equity (solidarity) Bad psychometric proportions Unclear use of consensus by expert panels Not preferred But often used, as values for many health state are available

28 Discrete Choice Experiments (DCE)
State 1 Moderate problems in walking about Some problems washing or dressing Some problems with performing usual activities Some pain or discomfort No psychosocial problems State 1 Some problems in walking about Moderate problems washing or dressing Some problems with performing usual activities Some pain or discomfort No psychosocial problems

29 Preference relate to distance
B 20% state A; 80% state B A B 30% state A; 70% state B A B 45% state A; 55% state B B A 80% state A; 20% state B

30 Lichamelijke gezondheid
DQI meet de kwaliteit van leven van personen met dementie op basis van vragen over 6 domeinen Geheugen 1 Geen problemen 2 Enige problemen 3 Ernstige problemen Rosan Oostveen Oriëntatie 1 Geen problemen 2 Enige problemen 3 Ernstige problemen Zelfzorg 1 Geen problemen 2 Enige problemen 3 Ernstige problemen Lichamelijke gezondheid 1 Geen problemen 2 Enige problemen 3 Ernstige problemen Sociaal functioneren 1 Geen problemen 2 Enige problemen 3 Ernstige problemen Stemming 1 Geen problemen 2 Enige problemen 3 Ernstige problemen Bijvoorbeeld, een scorecombinatie van betekent de volgende gezondheidstoestand: Geen geheugenproblemen Enige oriëntatieproblemen Geen problemen met de zelfzorg Geen problemen met de lichamelijke gezondheid Enige problemen met sociaal functioneren Enige stemmingsproblemen Bron: Scholzel et. Al. Health and Quality of Life Outcomes 2012

31 Elke gezondheidtoestand zegt iets over de kwaliteit van leven
Uit positie op meetlat is voor iedere gezondheidsdomein aan ieder antwoord een wegingsfactor toegekend aan de score Hoe groter de invloed van een score op een domein op de kwaliteit van leven, hoe hoger de wegingsfactor Best = 0 0,0 -0,5 Domeinen DQI Ernstige problemen (3) Enige problemen (2) Geen problemen (1) Lichamelijke gezondheid -0,82 -0,18 Geheugen -0,80 -0,23 Zelfzorg -0,71 -0,21 Stemming -0,59 -0,11 Sociaal functioneren -0,57 -0,17 Orientatie -0,49 -0,08 Totaalscore -3,98 -0,98 -1,0 -1,5 -2,0 -2,5 -3,0 Zorgprofessionals, mantelzorgers en patiënten hebben de gezondheidstoestanden een waarde gegeven op deze meetlat -3,5 De totaalscore op kwaliteit van leven van een dementerende is een optelling van de wegingsfactoren per vraag. De antwoorden van de persoon met dementie bepalen de wegingsfactoren -4,0 Slechtst = -3,98 Bron: Scholzel et. Al. Health and Quality of Life Outcomes 2012

32 Little difference between Cost/Life Year and Cost/QALY
Richard Chapman et al, 2004, Health Economics

33 Difference in QALYs makes little difference in outcome
Richard Chapman et al, 2004 “In a sizable fraction of cost-utility analyses, quality adjusting did not substantially alter the estimated cost-effectiveness of an intervention, suggesting that sensitivity analyses using ad hoc adjustments or 'off-the-shelf' utility weights may be sufficient for many analyses.” “The collection of preference weight data should […] should only be under-taken if the value of this information is likely to be greater than the cost of obtaining it.”

34 QALYs make a difference when:
Chronic disease Palliative Long term negative consequences