Practical communication guidance to improve phase 1 informed consent conversations and decision-making in pediatric oncology

Title

Practical communication guidance to improve phase 1 informed consent conversations and decision-making in pediatric oncology

Creator

Johnson LM; Leek AC; Drotar D; Noll RB; Rheingold SR; Kodish ED; Baker JN

Identifier

Publisher

Cancer

Date

2015

Subject

Ethics; patient perspectives; Pediatric oncology; physician communication

Description

BACKGROUND: It can be difficult to explain pediatric phase 1 oncology trials to families of children with refractory cancer. Parents may misunderstand the information presented to them, and physicians may assume that certain topics are covered in the informed consent document and need not be discussed. Communication models can help to ensure effective discussions. METHODS: Suggestions for improving the informed consent process were first solicited from phase 1 study clinicians via questionnaire. Eight parents who had enrolled their child on a phase 1 pediatric oncology trial were recruited for an advisory group designed to assess the clinicians' suggestions and make additional recommendations for improving informed consent for pediatric phase 1 trials. RESULTS: A phase 1 communication model was designed to incorporate the suggestions of clinicians and families. It focused on educating parents/families about phase 1 trials at specific time points during a child's illness, but specifically at the point of disease recurrence. An informative phase 1 fact sheet that can be distributed to families was also presented. CONCLUSIONS: Families who will be offered information regarding phase 1 clinical trials can first receive a standardized fact sheet explaining the general purpose of these early-phase clinical trials. Parental understanding may be enhanced further when oncologists address key themes, beginning at the time of diagnosis and continuing through important decision points during the child's illness. This model should be prospectively evaluated. Cancer 2015. © 2015 American Cancer Society.
2015-04

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Type

Journal Article

Citation List Month

Backlog

Citation

Johnson LM; Leek AC; Drotar D; Noll RB; Rheingold SR; Kodish ED; Baker JN, “Practical communication guidance to improve phase 1 informed consent conversations and decision-making in pediatric oncology,” Pediatric Palliative Care Library, accessed January 17, 2022, https://pedpalascnetlibrary.omeka.net/items/show/14522.

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