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

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.

Keywords: cancer; child health; feasibility studies; health communication; longitudinal studies; prognosis; prospective studies.

Figure 1

Timeline of clinical and research events across the study. At each disease reevaluation time point, mixed methods data collection was performed.