Differences in Patient and Parent Preferences for Prognostic Communication Across Disease Milestones in Advanced Childhood Cancer

Authors

Rachel A. Kentor, Divisions of Palliative Care and Psychology, Department of Pediatrics, Baylor College of Medicine/Texas Children's Hospital, Houston, Texas, USA.
Shoshana Mehler, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
Caroline Christianson, Division of Pediatric Hematology/Oncology, NYU Langone Health, New York City, New York, USA.
Harmony Farner, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
Tara M. Brinkman, Department of Psychology and Biobehavioral Sciences, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
Justin N. Baker, Division of Quality of Life and Pediatric Palliative Care, Department of Pediatrics, Stanford University and Stanford Medicine Children's Health, Palo Alto, California, USA.
Pamela S. Hinds, Department of Nursing Science, Professional Practice & Quality, Children's National Hospital, Washington, District of Columbia, USA.
Jennifer W. Mack, Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
Erica C. Kaye, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.

Document Type

Journal Article

Publication Date

8-4-2025

Journal

Pediatric blood & cancer

DOI

10.1002/pbc.31964

Keywords

adolescent and young adult; cancer; communication; parent; pediatric; prognosis

Abstract

BACKGROUND: Navigating prognostic communication is challenging for clinicians caring for adolescents and young adults (AYAs) with poor-prognosis cancer. Presently, little is known about how AYA and parent preferences for prognostic disclosure evolve over time. This study explored communication preferences at key illness milestones of disease progression to inform individualized, person-centered approaches to optimize prognostic disclosure. PROCEDURE: Sixty-five participants, including 25 AYAs aged 12-25 years and 40 parents, were recruited at distinct illness timepoints-diagnosis, relapse/progression, Phase I/II trial enrollment, and bereavement-to participate in semi-structured interviews about their preferences for timing, style, and content of prognostic communication. Rapid analysis was conducted to generate and compare themes across timepoints. RESULTS: Preferences for early, ongoing, and repeated prognostic discussions were increasingly reported by AYAs and parents at advancing illness milestones, with bereaved parents particularly emphasizing the value of early disclosure in retrospect. Parents of living AYAs, though not bereaved parents, advised oncologists to consider excluding AYAs from prognostic conversations-a view rarely shared by AYAs themselves. AYAs and parents preferred oncologist-led communication and also advocated for the inclusion of multidisciplinary clinicians. CONCLUSIONS: These findings highlight the dynamic nature of prognostic communication preferences across the illness trajectory and key variances between AYA and parents' preferences. Early and serial prognostic conversations are welcomed by many AYAs and parents, and multidisciplinary support may enhance communication satisfaction, particularly as preferences shift over time. Future research will investigate longitudinal interventions that recognize evolving communication preferences to personalize prognostic disclosure across pediatric cancer care.

APA Citation

Kentor, Rachel A.; Mehler, Shoshana; Christianson, Caroline; Farner, Harmony; Brinkman, Tara M.; Baker, Justin N.; Hinds, Pamela S.; Mack, Jennifer W.; and Kaye, Erica C., "Differences in Patient and Parent Preferences for Prognostic Communication Across Disease Milestones in Advanced Childhood Cancer" (2025). GW Authored Works. Paper 7827.
https://hsrc.himmelfarb.gwu.edu/gwhpubs/7827

Department

Pediatrics