Patient Preference and Adherence (Oct 2018)
How do parents and providers trade-off between disability and survival? Preferences in the treatment of pediatric medulloblastoma
Abstract
Amir Khakban,1 Tima Mohammadi,2 Larry D Lynd,1 Don J Mabbott,3,4 Eric Bouffet,5,6 Louise Gastonguay,1 Zafar Zafari,7 David Malkin,5,6 Michael D Taylor,8,9 Carlo A Marra10 1Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, BC, Canada; 2Centre for Health Evaluation and Outcome Sciences, University of British Columbia, St Paul’s Hospital, Vancouver, BC, Canada; 3Department of Psychology, University of Toronto, Toronto, ON, Canada; 4Department of Psychology, The Hospital for Sick Children, Toronto, ON, Canada; 5Department of Pediatrics, University of Toronto, Toronto, ON, Canada; 6Department of Haematology/Oncology, The Hospital for Sick Children, Toronto, ON, Canada; 7Health Policy and Management, Mailman School of Public Health, Columbia University, New York, NY, USA; 8Departments of Surgery, Laboratory Medicine and Pathobiology, University of Toronto, Toronto, ON, Canada; 9Department of Neurosurgery, The Hospital for Sick Children, Toronto, ON, Canada; 10School of Pharmacy, University of Otago, Dunedin, New Zealand Objective: The aim of this study was to determine the preferences of parents with children with medulloblastoma and clinicians who manage this condition and their trade-offs between survival and disability using a best–worst scaling (BWS) choice experiment. Methods: Mixed methods were used to develop a BWS tool. Health professionals involved in the care of medulloblastoma patients were contacted through oncology networks in Canada. Parents of children diagnosed with brain tumors were recruited via two clinics in Vancouver and Toronto. The profile case BWS was used with each participant completing 12 choice profiles with the respondent indicating the best and worst features of each profile. Surveys were stratified into good, moderate, and poor prognosis based on the probability of survival presented. Paired model conditional logit analysis was used to generate quantitative preferences. Results: Fifty-four parents (80% female) and 176 providers (36% female, 79% oncologists) participated in this study. There were many similarities in the parents’ and providers’ preferences for treatment although the parents tended to value survival higher than disability while providers seemed to value the opposite. Specifically, providers were willing to take more risk of recurrence in a child with good prognosis compared to intermediate and poor prognosis. Also, parents were less willing to take more survival risks than providers when they had to trade-off between mild disability and survival rate. Conclusion: This study provides useful insights into the preferences of parents and health care providers, the stakeholders of a collaborative decision for the treatment of pediatric medulloblastoma, and compares their values and trade-offs between different levels of survival and disability. Keywords: best–worst scaling, BWS, preference, medulloblastoma, trade-off, cancer
