Search

Background: Treatment decision-making in pediatric oncology can be complex. Recent advances in genome sequencing and novel or 'personalized' therapies potentially increases the complexity of decision-making and treatment options., Objectives: This study explored the views and experiences of healthcare providers (HCPs) and parents with respect to decision-making in difficult-to-treat cancers, including genomic decision-making., Methods: A two-phase qualitative study was undertaken in which oncologists and nurses and parents of children with relapsed and refractory cancers were interviewed using a semi-structured interview guide. Data were analyzed thematically, with a focus on measurable themes relevant to the development of candidate attributes for a discrete choice experiment (DCE). Secondly, a review of studies that utilized stated preference experiments in the fields of genomics, medical decision-making, and pediatrics was undertaken and compared with the candidate attributes identified from interviews., Results: Six candidate attributes were developed from the interview themes: clinical benefit, quality of life (QoL) including both treatment effects and functionality, likelihood of a target, cost (who pays), recommendation of HCP or extent family supported the decision, and whether a biopsy was needed. Two further candidate attributes were identified from the literature review: severity of illness and cost (dollar amount)., Conclusions: This study identified eight candidate attributes that will be further validated prior to developing a DCE aimed at better understanding factors influencing decision-making related to genomic sequencing and personalized medicine. This study and the proposed DCE will contribute to improving ethical and clinical practices in the application of novel genomic technology in pediatric oncology.

Objective: Pain and fatigue are under-researched late effects of childhood cancer and its treatment, and may be interpreted by survivors as indicating cancer recurrence. Moreover, unmet information needs for managing pain and fatigue may be related to fear of cancer recurrence. We investigated the complex relationships between perceived cancer-related pain and fatigue, unmet information needs for managing pain and fatigue, and fear of cancer recurrence., Methods: We surveyed 404 adult survivors of any form of childhood cancer (M = 16.82 years since treatment completion)., Results: Many survivors reported perceived cancer-related pain (28.7%) and fatigue (40.3%), and anticipated future pain (19.3%) and fatigue (26.2%). These symptomologies were all related to unmet information needs for managing pain (18.8%) and fatigue (32.2%; all p's<.001). Survivors reporting unmet information needs for managing pain (B = .48, 95% CI = 0.19-0.76, p = .001) and fatigue (B = .32, 95% CI = 0.06-0.52, p = .015) reported higher fear of cancer recurrence than survivors reporting no information needs., Conclusion: Survivors often have unmet information needs for managing pain and fatigue, and these unmet needs are related to fear of cancer recurrence., Practice Implications: Long-term follow-up clinics should assess pain and fatigue. Information provision about pain and fatigue may be an important tool to help manage fear of cancer recurrence., (Copyright © 2019 Elsevier B.V. All rights reserved.)