How do parents and providers trade-off between disability and survival? Preferences in the treatment of pediatric medulloblastoma

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. Mixed methods were used to develop a BWS tool. Health...

Full description

Saved in:

Bibliographic Details
Published in:	Patient preference and adherence Vol. 12; pp. 2103 - 2110
Main Authors:	Khakban, Amir, Mohammadi, Tima, Lynd, Larry D, Mabbott, Don J, Bouffet, Eric, Gastonguay, Louise, Zafari, Zafar, Malkin, David, Taylor, Michael D, Marra, Carlo A
Format:	Journal Article
Language:	English
Published:	New Zealand Dove Medical Press Limited 01-01-2018 Dove Medical Press
Subjects:	Analysis Best Worst Scaling (BWS) Brain tumors Cancer Care and treatment Disabilities Gliomas Health aspects Health care industry Medical personnel Medulloblastoma Original Research Pediatrics Preference Trade-off Tumors Canada Ontario best–worst scaling trade-off cancer medulloblastoma preference BWS
Online Access:	Get full text
Tags:	Add Tag No Tags, Be the first to tag this record!

Description
Summary:	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. 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. 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. 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 medullo-blastoma, and compares their values and trade-offs between different levels of survival and disability.
Bibliography:	ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 23
ISSN:	1177-889X 1177-889X
DOI:	10.2147/PPA.S168739