Project Description
Understanding Communication to Achieve Trust (U-CHAT): A Prospective Longitudinal Study of Prognostic Communication between Pediatric Oncologists, Children with High-Risk Cancer, and their Parents
High
quality communication between pediatric oncologists, patients, and parents is
imperative for facilitation of therapeutic alliance and alignment of medical
management with goals of care. Historically, communication research in
pediatric oncology has been cross-sectional, retrospective, and reliant on
survey methodology, and little is known about the specific communication
strategies used by pediatric oncologists to share prognostic information or the
impact of varying communication techniques on prognostic understanding. This
prospective longitudinal study utilizes audio-recording technology to capture
serial disease reevaluation discussions occurring in real-time between
pediatric oncologists, patients with high-risk cancer, and families, with
triangulation of supplemental data including a validated non-verbal
communication tool and matched surveys and semi-structured interviews completed
by oncologists and patients/parents following recorded conversations. A
preliminary pilot conducted in a cohort of solid tumor patients demonstrated
high rates of feasibility and acceptability; given pilot success, we propose
study expansion to follow a large cohort of high-risk pediatric tumor patients
through the end of life. We hypothesize that explicit prognostication will
occur infrequently and that provision of clear prognostic information will be
associated with increased prognostic awareness and therapeutic alliance. Using
mixed methods, we aim to: 1) describe the content, quality, and evolution of
prognostic communication across the advancing illness trajectory for pediatric
tumor patients; 2) identify associations between specific communication
strategies and oncologist-patient/parent concordance related to prognostic
awareness; and 3) identify targetable gaps in prognostic communication quality
to serve as the basis for development of a clinical intervention pilot in the
high-risk pediatric tumor population. This prospective, longitudinal study will
increase our understanding of how prognostic information is shared, processed,
and understood in the context of high-risk pediatric tumors across the
advancing illness course, as well as enable investigation of an intervention to
improve prognostic communication for children with high-risk cancer and their
families.
Bio
Erica C. Kaye, MD, MPH, is an Assistant Professor
in the Department of Oncology, Division of Quality of Life and Palliative
Medicine, at St. Jude Children’s Research Hospital. Her mixed methods research
aims to improve prognostic communication between oncologists, children with
high-risk cancer, and their families across the advancing illness trajectory to
the end of life. Dr. Kaye received her Bachelor of Arts in English Literature
from Yale, her Medical Degree from Harvard, and her Masters in Public Health
from Johns Hopkins Bloomberg School of Public Health with a focus on
qualitative and mixed methodology training. She completed her pediatrics
residency at Boston Children’s Hospital, followed by two subspecialty
fellowships in pediatric hematology-oncology and hospice and palliative
medicine at St. Jude.
Email: Erica.Kaye@STJUDE.ORG