Cancer care decision-makers’ perspectives on quality-adjusted life years (QALYs) for decision-making and resource allocation Elena Papadakis Vancouver, BC ARCC Canadian Centre for Applied Research in Cancer Control

1.Evidence-based Marginal Analysis (EBMA) 2.Quality-adjusted Life Years (QALYs) 3.Objectives 4.Methods & Perspective Types 5.Results 6.Discussion 7.Summary Presentation Outline

Evidence-Based Marginal Analysis (EBMA) Define aim and scope Form Steering Committee Determine current program budget Establish decision- making criteria Identify areas for resource release Identify areas for new resource use Make allocation recommendations Validity check and final decisions For each area identified: Form Advisory Panel Collect local costs/outcomes Build Markov model CEA using QALYs EBMA PBMA Five Program Areas 1. Adjuvant trastuzumab (Herceptin) in breast cancer 2. Bevacizumab (Avastin) in metastatic colorectal cancer 3. Mammography for women with dense breast tissue 4. PET-CT for NSCLC staging 5. MRI for breast cancer screening

Quality-adjusted Life Years (QALYs) A QALY is a health outcome measure that combines survival and quality-of-life into a single metric

Objective: To explore decision- makers’ views and attitudes towards QALYs for decision-making and resource allocation in cancer care Today’s Presentation

Methods Data Collection Purposeful sampling strategy 20 decision-makers Hour-long, semi-structured interviewing Data Analysis Transcribe interviews verbatim Code interview transcripts manually Organize codes into themes and subthemes Upload codes onto NVivo 2008

Years Exp. Health Care Years Exp. Priority- setting TypeNo.GenderAge Clinical95 M 4 F Managerial83 M 5 F Scientific33 M 0 F Total2011M/9F Perspective Types

EP: On a scale from one to five, what was your understanding of a QALY prior to the advisory panel meetings? DM 116: A QALY? EP: Yes a QALY. DM 116: Oh you’re attacking my memory. Managerial Understanding of QALYs Prior to EBMA Program Areas Low → 40% Average → 15% High → 45% Results: Familiarity with QALYs

“On a scale from one to five, one being the lowest, five being the highest, how relevant are QALYs to decision makers at BCCA?” Unaware → 15% Low → 20% Average → 25% High → 40% “What counts as evidence when setting priorities in decision- making and resource allocation?” One decision-maker cited “quality-of-life” data as evidence Results: Relevance of QALYs

EP: How relevant are QALYs to decision-makers at the BC Cancer Agency? DM 123: My own concern is the quality adjustment is often based on some pretty flimsy data … The quality-adjustment is not exactly flaky but certainly it’s very imprecise … It’s often based on small samples in fairly restricted situations. Managerial w/ scientific exp. Results: Emergent Themes

DMs’ attitudes towards QALYs linked to perspectives on QoL data QoL data are not as robust as they could be (4) Results: Emergent Themes

EP: How relevant are QALYs to decision-makers at the BC Cancer Agency? DM 117: For curative I don’t think it’s a big deal. People are willing to go through hell to get cured. Now for palliative, it’s really all about QALY. Managerial w/scientific exp. Results: Emergent Themes

DMs’ attitudes towards QALYs linked to perspectives on the value of longevity versus the value of quality-of-life Longevity valued above quality-of-life (14) 1. Curative interventions take precedence over palliative ones (8) 2. People who have curable conditions are willing to suffer (1) 3. Clinicians are not convinced that quality-of-life is the most valuable end- point (5) Results: Emergent Themes

EP: Your thoughts on pain management drugs as a part of BC Cancer Agency’s budget? DM 129: I think that the BC Cancer Agency has been very, very narrow-minded in terms of its role … I think we could do better with end-of-life … If we are cancer doctors, we look after the whole spectrum, we don’t just look after the narrow spectrum. Clinical Results: Emergent Themes

Decision-makers recognize that QoL is an important part of cancer care QoL is very important (36) 1. Symptomatic relief and palliation are highly valuable in cancer care (12) 2. Since the majority of cancers are incurable, it would be unreasonable not to be involved in palliative care (3) 3. QoL is part of the cancer spectrum & should be factored into D-M (8) 4. Conventional cancer care could put more emphasis on palliation (4) 5. Curative interventions only valued higher than palliative ones provided they improve QoL at the same time (1) 6. An element of humanity and compassion must be accounted for in D-M (4) 7. It doesn’t matter whose budget palliative drugs come from so long as they are available to the people who need them (4) Results: Emergent Themes

 Scholarship suggests that health care decision-makers have limited training in economic methods.  The perception that quality-of-life data are not as robust as they could be means that QALYs are perceived by some as being a poor source of evidence.  The tendency among decision-makers to value longevity above quality-of-life means that the applicability of QALYs to cancer care may not be fully appreciated at this time. Discussion

 Decision-makers recognize that conventional cancer care does not put as much emphasis on palliative care as it does on treatment.  Psychological, emotional and spiritual dimensions of human health are not central to biomedical explanations of cancer.  Palliative interventions might fare better in decision- making and resource allocation contexts if a more balanced approach to cancer care was more pervasive. Discussion

 Quality-of-life is an important part of cancer care but some decision-makers are reluctant to embrace QALYs because of the perception that quality-of-life data are not as robust as they could be.  Efforts to improve decision-makers’ perceptions of quality-of-life data could bolster their confidence in QALYs, however competing judgments about the value of longevity versus the value of quality- of-life are likely to persist.  A more balanced approach to cancer care could potentially boost the perceived value of quality-of-life and ultimately the applicability of QALYs to cancer care. Summary

Co-authors Dr. Stuart Peacock Decision-makers and content experts EBMA Steering Committee EMBA Screening Mammography, Trastuzumab, PET- CT, MRI, and Bevacuzimab Advisory Panels Funding agencies Canadian Institutes of Health Research Michael Smith Foundation for Health Research Acknowledgements