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Longitudinal investigation of prognostic communication: Feasibility and acceptability of studying serial disease reevaluation conversations in children with high-risk cancer

Kaye, EC; Gattas, M; Bluebond-Langner, M; Baker, JN; (2019) Longitudinal investigation of prognostic communication: Feasibility and acceptability of studying serial disease reevaluation conversations in children with high-risk cancer. Cancer 10.1002/cncr.32499. (In press). Green open access

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Abstract

BACKGROUND: Prospective investigation of medical dialogue is considered the gold standard in prognostic communication research. To the authors' knowledge, the achievability of collecting mixed methods data across an evolving illness trajectory for children with cancer is unknown. METHODS: The objective of the current study was to investigate the feasibility and acceptability of recording sequential medical discussions at disease reevaluation time points for children with high‐risk cancer. Mixed methods data (ie, surveys, interviews, checklists, and chart reviews) corresponding to each disease reevaluation conversation also were captured in real‐time for 34 patients across 24 months at an academic pediatric cancer center. RESULTS: All eligible oncology clinicians (65 of 65 clinicians; 100%) and the majority of eligible patient/parent dyads (34 of 41 dyads; 82.9%) enrolled on the study; of 200 disease reevaluation discussions, 185 discussions (92.5%) were recorded, totaling >3300 minutes of recorded medical dialogue. Longitudinal data were captured for 31 of 34 patient/parent dyads (91.2%). The vast majority of study materials were completed, including 138 of 139 nonverbal communication checklists (99.3%), all 49 oncologist surveys (100%), 40 of 49 parent surveys (81.6%), all 34 oncologist interviews (100%), and 24 of 34 parent interviews (70.6%). Only 1 parent reported participation to be a “very” distressing experience, no parents believed that their level of distress warranted speaking with a psychosocial provider, and the majority of parents (18 of 29 parents; 62.1%) described study participation as “somewhat” or “very” useful to them. CONCLUSIONS: The prospective, longitudinal investigation of prognostic communication using a mixed methods approach appears to be feasible and acceptable to clinicians, patients, and families. The study of sensitive content can be accomplished without causing undue participant burden or harm, thereby enabling further advancement of communication research.

Type: Article
Title: Longitudinal investigation of prognostic communication: Feasibility and acceptability of studying serial disease reevaluation conversations in children with high-risk cancer
Open access status: An open access version is available from UCL Discovery
DOI: 10.1002/cncr.32499
Publisher version: https://doi.org/10.1002/cncr.32499
Language: English
Additional information: © 2019 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society. This is an open access article under the terms of the Creative Commons Attribution‐NonCommercial License (http://creativecommons.org/licenses/by-nc/4.0/).
Keywords: cancer, child health, feasibility studies, health communication, longitudinal studies, prognosis, prospective studies
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Population, Policy and Practice Dept
URI: https://discovery.ucl.ac.uk/id/eprint/10083798
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