QALYs and Ethics Is there an ethical / valid alternative? Prof. dr. Jan van Busschbach 1

Arguments reimbursement Pro Contra Effectiveness Compassion Solidarity Empathy Costs Cost effectiveness

Health Economics Comparing different allocations Should we spend our money on Wheel chairs Screening for cancer Comparing costs Comparing outcome Outcomes must be comparable Make a generic outcome measure

Outcomes in health economics Specific outcomes are incompatible Allow only for comparisons within the specific field Clinical successes: successful operation, total cure Clinical failures: “events” “Hart failure” versus “second psychosis” Generic outcome are compatible Allow for comparisons between fields Life years Quality of life Most generic outcome Quality adjusted life year (QALY)

Quality Adjusted Life Years (QALY) Example Blindness Time trade-off value is 0.5 Life span = 80 years 0.5 x 80 = 40 QALYs 0.00 1.00 X 0.5 x 80 = 40 QALYs Life years 40 80

Area under the curve

Cost per QALY 20 QALY gained €100.000 Cost per QALY €100.000/20 QALYs = €5000/QALY

I want to live in… Country A Country B Life expectancy 80 Quality of life 0.8 Focus on common diseases Life expectancy 78.8 Quality of life 0.75 Focus on rare catastrophic diseases

QALY league table

The QALY straw man How can quality of life be ‘objective’? How can you validly measure it?

In the past, much criticism Cohen CB. Quality of life and the analogy with the Nazis. Journal of Medicine and Philosophy 8: 113-35, 1983.

Criticism remains ….the strictly fascist essence of those QALYs (so-called Quality-Adjusted Life Years)…

10.915 QALY publications

Three problems with the criticism ….. Arguments represent aversion toward a limited budget Proposed alternatives turn out to be the same Even equity concerns are in need of QALY

1. Arguments often represent aversion limited budget “…Wij hebben duidelijk aangegeven dat een discussie over "wat maatschappelijk nog aanvaardbaar is" [kosten per QALY] alleen gevoerd mag worden als geldverslindende "frivoliteiten" door de maatschappij […] zijn uitgebannen. Bijvoorbeeld "joint strike fighters“… Kees van Bezooijen in his roll as Patient representative, 2007

Three problems with the criticism ….. Arguments represent aversion toward a limited budget Proposed alternatives turn out to be the same Even equity concerns are in need of QALY

2. Proposed alternative turns out to be the same… TWiST Time Without Symptoms of disease and subjective Toxic effects of treatment HYE Health Years Equivalent SAVE Saved Young Life Equivalent DALY Disability Adjusted Life Years Capabilities Amartya Sen

Burden of Disease Project WHO Global Burden of Disease (GBD) Impact of diseases world wide Estimates of epidemiology per disease Mortality Quality of life losses In need of one measure of health But WHO disliked QALY… 18

Chris Murray Harvard Worked outside DALY School of Public Health Health economics Med Decision Making DALY Disability Adjusted Life Years Lost life years Lost Quality of life 19

DALY / QALY DALY QALY 20

Two points of critique QALYs are measured in an invalid way Life years is not the problem, thus… It must be the validity of quality of life assessment… One should not use cost effectiveness Often referred to as ‘ethics’

Falsification QALY Life years 1.0 Kwaliteit van leven Efficiency Equity 0.0 A B C

Falsification of life years 80 Life years 60 40 20 A B C 23

Efficiency/equity debate Cost per QALY represents efficiency But is our health care system based on efficiency? In health care, next to efficiency… Compassion Solidarity Empathy

Is (should) burden (be) a criterion? Pronk & Bonsel, Eur J Health Econom 2004, 5: 274-277

Costs/QALY as indicator of solidarity € 40.000 80 € 30.000 60 € 50.000 Levensjaen 40 20 A B C 26

Costs/QALY versus Burden of disease X € 80.000 € 60.000 € 40.000 € 20.000 € 0 Burden of disease

Three problems with the criticism ….. Arguments represent aversion toward a limited budget Proposed alternatives turn out to be the same Even equity concerns are in need of QALY

Dutch Council for Public Health and Health Care (De Raad voor de Volksgezondheid en Zorg, 2006)

QALYs moderate NICE’s decisions At average levels for all covariates, a decision would have a 50% chance of rejection if its ICER were £45,118/QALY Dakin, Devlin, Rice, Parkin, O’Neill, Feng (2014) The influence of cost effectiveness and other factors on NICE decisions. Health Economics, 2014

Conclusion Quality of life can be measured Usual multidimensional Unidimensional: QALYs QALYs can validly be use in cost effectiveness research Burden of disease is also a criterion On need QALYs to measure burden