The impact of disease labels on the general public s perceptions of hypothetical rationing scenarios

Transcription

1 The impact of disease labels on the general public s perceptions of hypothetical rationing scenarios Helen McTaggart-Cowan, Syed Rahman, and Stuart Peacock Advancing Health Economics, Services, Policy and Ethics 1

2 Decision-making in health care Health care spending in Canada continues to rise Economic evaluation is used to guide decisions In other countries, difficult decisions are being based on general public s preferences 2

3 Why general public preferences? Preferred in publicly funded health care systems Maximize societal health benefits Operate under a veil of ignorance (an unawareness of their future health prospects) There is a lack of evidence as to whether members of the general public are adequate decision-makers Do the public have well informed preferences? Are those preferences valid for decision-making?

4 The impact of disease labels Disease labels may introduce emotions and stereotypes into individuals' perceptions Presence of a 'cancer premium' may influence resource allocation decisions Contextual factors (e.g., patient's age) may affect funding decisions However, there is mixed evidence on the impact of labels on individuals' decisions in the literature 4

5 Study objective There is a need to understand the impact of disease labels Especially for general public s perceptions of hypothetical rationing scenarios Are they adequate decision-makers? Also investigate the role of perspectives (i.e., individual vs. social decision-maker) 5

6 Methods Members of the general population were recruited to participate in one of 8 focus groups Mail-out Poster campaign Mailing lists of volunteering organizations 6

7 Outline of focus group sessions Individual perspective group Decision-maker perspective group Initial Rating Initial Rating Re-rating Re-rating Group Discussion Group Discussion Final Rating Final Rating 7

8 Hypothetical rationing scenarios Four scenarios were appraised on a priority scale Initial rating scenarios described in general terms Re-rating disease labels provided in the scenarios (i.e., breast cancer, COPD, osteoarthritis, and paralysis) Final rating as re-rating scenario (after discussion) 8

9 Hypothetical scenarios (1) Who:68-year-old Anita Anita Her symptoms:anita suffers from severe pain and stiffness in her hips and legs. Her illness: Anita has How this affects her?she has troubles with her osteoarthritis. This is everyday activities (e.g., walking, running a condition that errands). results in the Her quality of life:anita takes breakdown daily pain of joints medication and her quality and of affects life is reported 10% of all to be Canadians. Her treatment:after speaking with her doctor, Anita is given the opportunity receive a medical procedure that would enable her to become more mobile and more independent. Her quality of life would increase to Cost:The procedure will cost the health system $20,000. David Who:13-year-old David, a star athlete at his school. His symptoms:david is confined to the hospital bed after getting into a severe bike accident. His illness: David is How this affects him?david is depressed because paralyzed from waist he is unable to play sports. down. He is unable to His quality of life:david is confined use his legs to the at hospital all so bed and he rates his quality he of life cannot at 0.20 walk because or he feels that sports was the play sole sports. purpose of his life. His treatment:there is a new medical procedure available that would enable David to be at a quality of life of Cost:The procedure will cost the health system $20,000. 9

10 Hypothetical scenarios (2) Martin Who:51-year-old Martin, a heavy smoker since he was a teenager. His symptoms:martin His experiences illness: Martin a consistent has cough, wheezing, and chronic a shortness obstructive of breath. pulmonary disease (COPD) How this affects him?martin and his symptoms has to miss will work come for days at a time because and go his throughout symptoms his are life. so bad. COPD affects 10% of all His quality of life:he Canadians. reports his This quality disease of life to be slowly damages the airways, the breathing tubes that His treatment:his doctor carry air has in advised and out him of lungs. that by quitting smoking and There taking is a no drug cure daily for COPD. for the rest of his life, there is a chance that Martin s quality of life could improve to Cost:The procedure will cost the health system $20,000. Who: 38-year-old Rose Rose Her symptoms:rose is constantly tired and worried after observing something different in one of her breasts during one of her baby s nightly feedings. Her illness: After How this affects her?rose doing is unable a series to care of for her child. tests, her doctor has Her quality of life:she rates diagnosed her quality Rose of life with at 0.30 because she has many an side aggressive effects after form going to the hospital to receive her of treatment. breast cancer. Her treatment: Her doctor has advised her that with a risky surgical procedure there may be chance that Rose will be able to return to a full and normal life (quality of life = 1). Cost:The procedure will cost the health system $20,

11 Data analysis (1) A mixed-methods approach was undertaken Qualitative and quantitative techniques were used Group discussion Digitally recorded and transcribed verbatim Analyzed using framework approach Used for applied or policy-relevant qualitative research This approach allows themes to emerge from the interviews, while being supported by the literature 11

12 Data analysis (2) Quantitative results Analyzed using statistical tests of association Effect of the disease label (change between initial rating and rerating) Effect of group discussion (change between re-rating and final rating) Effect of the different perspectives 12

13 Study participants 73 participants from the general public were divided into 8 focus groups Age Group Males Females years 19 (50.0%) 19 (54.3%) years 11 (28.9%) 10 (28.6%) > 60 years 8 (21.1%) 6 (17.1%) 13

14 Qualitative results (1) The identity of the disease labels influenced individuals' decision-making process Being more informed about the disease prevalence Verifying their assumptions about the disease in question 14

15 Qualitative results (2) Other factors that affected decision-making were: Patients ages to equalize lifetime health Preference for treating the young Change in quality of life to maximize health Preference for treating those with the largest gain in QOL Experience with disease under investigation to empathize with the patients 15

16 Aggregate priority ratings Scenario Initial Rating Re-Rating Final Rating Breast cancer 75.6 (±19.6) 80.6 (±18.1) 81.7 (±19.0) COPD 39.8 (±25.4) 39.1 (±23.5) 41.9 (±24.6) Osteoarthritis 62.6 (±22.6) 68.7 (±19.4) 71.5 (±18.1) Paralysis 79.5 (±19.7) 77.1 (±18.7) 78.4 (±16.6) The effect of the disease The label effect of the discussion 16

17 The effect of individual vs. decision-maker perspectives Scenario Individual Perspective Decision-maker Perspective Initial Rating Re-Rating Final Rating Initial Rating Re- Rating Final Rating Breast Cancer (Rose) 78.6 (±17.9) 85.8 (±12.0) 84.1 (±15.5) 72.3 (±21.0) 75.0 (±21.7) 79.0 (±22.2) COPD (Martin) 42.4 (±26.5) 42.3 (±24.8) 46.5 (±25.4) 37.0 (±24.2) 35.6 (±21.7) 36.9 (±23.1) Osteoarthritis (Anita) 68.0 (±20.7) 72.2 (±17.3) 73.3 (±18.5) 56.8 (±23.5) 64.9 (±20.9) 69.6 (±17.8) Paralysis (David) 83.8 (±17.8) 80.0 (±17.5) 81.6 (±15.3) 74.9 (±20.8) 73.9 (±19.6) 75.1 (±17.6)

18 Conclusions Members of the general population carefully considered all aspects of the rationing scenarios prior to making their decisions When specific information about the condition is provided, their views appeared to systematically differ 18

19 Future work Results presented will build into a larger study that assess what the general public is willing to pay for a QALY in cancer Themes identified in the qualitative analysis will form the basis of attributes to be used in a DCE

20 Acknowledgements Pfizer Canada ARCC team 20