title: Societal preferences in the treatment of pediatric medulloblastoma: Balancing risk of death and quality of life.
abstract: Medulloblastoma is the most prevalent childhood brain cancer. Children with medulloblastoma typically receive a combination of surgery, radiation, and chemotherapy. The survival rate is high but survivors often have sequelae from radiotherapy of the entire developing brain and spinal cord. Ongoing genetic studies have suggested that decreasing the dose of radiation might be possible among children with favorable molecular variants; however, this may result in an increased disease recurrence. As such, there is a need to investigate the nature of trade-offs that individuals are willing to make regarding the treatment of medulloblastoma.
  
  
  
  We used best-worst scaling to estimate the importance of attributes affecting the general public's decision making around the treatment of medulloblastoma. After conducting focus groups, we selected three relevant attributes: (1) the accuracy of the genetic test; (2) the probability of serious adverse effects of the treatment(s); and (3) the survival rate. Using the paired method, we applied a conditional logit model to estimate preferences.
  
  
  
  In total, 3,006 respondents (51.3% female) with an average age of 43 years answered the questionnaires. All coefficients were statistically significantly different from zero and the attribute levels of adverse effects and the survival rate had the most impact on individuals' stated decision making.
  
  
  
  Overall, respondents showed high sensitivity to children experiencing disability particularly in the setting of a good prognosis. However, among children with poor prognostic molecular variants, participants showed tolerance about having a child with mild and partial disability compared to a low rate of survival.
authors.affiliation: Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, Canada.
authors.forename: Amir
authors.initials: A
authors.lastname: Khakban
authors.affiliation: Centre for Health Evaluation and Outcome Sciences, St. Paul's Hospital, University of British Columbia, Vancouver, BC, Canada.
authors.forename: Tima
authors.initials: T
authors.lastname: Mohammadi
authors.affiliation: Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, Canada.|Centre for Health Evaluation and Outcome Sciences, St. Paul's Hospital, University of British Columbia, Vancouver, BC, Canada.
authors.forename: Larry D
authors.initials: LD
authors.lastname: Lynd
authors.affiliation: The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
authors.forename: Don
authors.initials: D
authors.lastname: Mabbott
authors.affiliation: The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
authors.forename: Eric
authors.initials: E
authors.lastname: Bouffet
authors.affiliation: Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, Canada.
authors.forename: Louise
authors.initials: L
authors.lastname: Gastonguay
authors.affiliation: Centre for Clinical Epidemiology and Evaluation, The University of British Columbia, Vancouver, Canada.
authors.forename: Zafar
authors.initials: Z
authors.lastname: Zafari
authors.affiliation: The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
authors.forename: David
authors.initials: D
authors.lastname: Malkin
authors.affiliation: The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
authors.forename: Michael
authors.initials: M
authors.lastname: Taylor
authors.affiliation: School of Pharmacy, Otago University, Dunedin, New Zealand.
authors.forename: Carlo A
authors.initials: CA
authors.lastname: Marra
mesh_terms: D000328:Adult; D000367:Age Factors; D001932:Brain Neoplasms / Q000401:mortality / Q000503:physiopathology / Q000628:therapy; D018572:Disease-Free Survival; D005260:Female; D006801:Humans; D008297:Male; D008527:Medulloblastoma / Q000401:mortality / Q000503:physiopathology / Q000628:therapy; D008875:Middle Aged; D011788:Quality of Life; D012307:Risk Factors; D012959:Socioeconomic Factors; D015996:Survival Rate
keywords: best-worst scaling (BWS); medulloblastoma; preference