Defining and measuring tolerability in pediatric, adolescent, and young adult oncology: The essential voices

Authors

Susan K. Parsons, Department of Medicine, Tufts University School of Medicine, Tufts Medical Center, Boston, Massachusetts, USA.
Kathleen E. Montgomery, University of Wisconsin-Madison School of Nursing, Madison, Wisconsin, USA.
Julienne Brackett, Section of Hematology-Oncology, Department of Pediatrics, Baylor College of Medicine, Houston, Texas, USA.
Katie A. Devine, Department of Pediatrics, Rutgers Cancer Institute, New Brunswick, New Jersey, USA.
Leanne M. Embry, Pediatric Hematology/Oncology, University of Texas Health Science Center at San Antonio, San Antonio, Texas, USA.
Katie A. Greenzang, Department of Pediatrics, Dana-Farber Cancer Institute, Harvard Medical School, Boston, Massachusetts, USA.
Philip J. Lupo, Department of Pediatrics, Baylor College of Medicine, Houston, Texas, USA.
Michelle M. Nuño, Department of Population and Public Health Sciences, University of Southern California, Los Angeles, California, USA.
Abby R. Rosenberg, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
Michael E. Roth, Department of Pediatrics, The University of Texas MD Anderson Cancer Center, Houston, Texas, USA.
Sue M. Zupanec, Department of Nursing, The Hospital for Sick Children, Toronto, Ontario, Canada.
Pamela S. Hinds, Department of Nursing Science, Professional Practice & Quality, Children's National Hospital, Washington, District of Columbia, USA.

Document Type

Journal Article

Publication Date

10-15-2025

Journal

Cancer

Volume

131 Suppl 2

DOI

10.1002/cncr.35947

Keywords

adolescent and young adult (AYA); caregiver‐reported outcomes; cooperative group, measurement; patient‐reported outcomes; pediatric oncology; tolerability

Abstract

In this review on the status of tolerability in pediatric oncology, the authors address the relevance and meaning of this important concept and offer a definition to represent treatment tolerability experiences of pediatric, adolescent, and young adult oncology patients. The authors acknowledge the incomplete progress of tolerability research in pediatric oncology clinical trials while describing the recent advances in validating relevant measures and embedding these in pediatric oncology clinical trials to document the symptom burden of specific cancer treatments. They advocate for the consistent use of three voices-patient, caregiver, and clinician-in pediatric oncology to achieve accurate and comprehensive estimates of treatment tolerability while recognizing that a primary voice may be necessary to match the main aim or goal of the proposed research. Future steps include establishing the validity of tolerability measures and methods in patients younger than 7 years and a careful examination of tolerability issues into survivorship.

APA Citation

Parsons, Susan K.; Montgomery, Kathleen E.; Brackett, Julienne; Devine, Katie A.; Embry, Leanne M.; Greenzang, Katie A.; Lupo, Philip J.; Nuño, Michelle M.; Rosenberg, Abby R.; Roth, Michael E.; Zupanec, Sue M.; and Hinds, Pamela S., "Defining and measuring tolerability in pediatric, adolescent, and young adult oncology: The essential voices" (2025). GW Authored Works. Paper 8275.
https://hsrc.himmelfarb.gwu.edu/gwhpubs/8275

Department

Pediatrics