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

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1 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? 2

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). 3

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 4

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? 5

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. 6

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. 7

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 8

9 Items to value  Patient  Health state 9

10 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 11 Visual Analogue Scale  From psychological research  Also called “category scaling”  Rescale from 0.00 to 1.00  Main critique  No guarantee ratio scale  Lower value then face value

12 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 13

14 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 15 Values differ, but differences are often constant N = 103 students

16 16 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 17 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 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 19 PTO gives low values

20 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 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): e

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

24 24 PTO uses calibrated VAS

25 25 Vos T, et al., 1999

26 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 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 28

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

30 1 Geen problemen 2 Enige problemen 3 Ernstige problemen 1 Geen problemen 2 Enige problemen 3 Ernstige problemen 1 Geen problemen 2 Enige problemen 3 Ernstige problemen 1 Geen problemen 2 Enige problemen 3 Ernstige problemen 1 Geen problemen 2 Enige problemen 3 Ernstige problemen 1 Geen problemen 2 Enige problemen 3 Ernstige problemen DQI meet de kwaliteit van leven van personen met dementie op basis van vragen over 6 domeinen Bron: Scholzel et. Al. Health and Quality of Life Outcomes 2012 Lichamelijke gezondheid Zelfzorg Sociaal functioneren Stemming Geheugen Oriëntatie 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 Rosan Oostveen

31 Elke gezondheidtoestand zegt iets over de kwaliteit van leven Bron: Scholzel et. Al. Health and Quality of Life Outcomes 2012 Best = 0 Slechtst = -3,98 -3,0 -3,5 -4,0 -1,5 -1,0 -0,5 -2,0 -2,5 0,0 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 Domeinen DQI Ernstige problemen (3) Enige problemen (2) Geen problemen (1) Lichamelijke gezondheid-0,82-0,180 Geheugen-0,80-0,230 Zelfzorg-0,71-0,210 Stemming-0,59-0,110 Sociaal functioneren-0,57-0,170 Orientatie-0,49-0,080 Totaalscore-3,98-0,980 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

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

33 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 34 QALYs make a difference when:  Chronic disease  Palliative  Long term negative consequences


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