Administrative Supplement: Assessing and Enhancing Survivorship Care

Emory University, Atlanta GA

Investigators

Linked publications, trials & patents

Abstract

EXPOSURE: Project Summary/Abstract This application is being submitted in response to the Notice of Special Interest (NOSI) identified as "NOT-CA- 24-041". Although engagement in long-term follow-up survivor care is critical to the lifelong health of the growing childhood cancer survivor (CCS) population, >25% of CCS are not accessing survivor care nationally. Understanding the factors impacting the landscape of pediatric survivor care (e.g., institutional uptake of standards, population reach, patient engagement) may reduce gaps in care delivery for CCS. It is crucial to engage CCS and their families in survivor care early to begin surveillance and educate young CCS about their risks. Strong engagement in survivor care of young CCS is required to support CCS in lifelong survivor care. The objectives of this supplement to the Winship Cancer Institute's NCI-designated P30 Cancer Center grant are to examine: 1) alignment of the care offered to pediatric CCS with the National Standards for Survivorship Care, 2) the long-term utilization of pediatric survivor services, and 3) patient- and family-level factors related to long-term engagement in survivor care. We propose a mixed-method study that includes qualitative interviews with pediatric providers, a retrospective chart review of a cohort of CCS patients, and secondary analyses of patient-reported outcome (PRO) data from CCS caregivers. Specifically, we aim to: Examine the institutional uptake of survivor services aligned with the National Standards for Survivorship Care offered in the Aflac Pediatric Cancer Survivor Program (Aim 1), Evaluate the reach of the Aflac Pediatric Cancer Survivor Program (Aim 2), and Identify patient-, caregiver- and family-level factors related to engagement in pediatric survivor care over time (Aim 3). In Aim 1, we will conduct qualitative interviews with N=15 local pediatric oncology and survivor care providers focused on the health system policies, processes, and evaluation methods used in the Aflac Pediatric Cancer Survivor Program. In Aim 2, we will use an existing cohort of pediatric oncology patients (<18 years) who became eligible for initial survivor services in 2016-2019 (N=284) and extract medical record data to determine the proportion and representativeness of CCS who participated in survivor clinic visits and recommended surveillance for late effects longitudinally over a five-year period. In Aim 3, we will use a subset of the Aim 2 cohort with PRO data available (N=138) to evaluate the impact of familial psychosocial functioning, CCS quality of life, caregiver health, knowledge of late-effects risks, and health beliefs during the off-therapy period on future engagement in survivor care services. Study results will be used to: 1) inform organizational improvements to support pediatric CCS at the Winship Cancer Institute, 2) develop a toolkit to help other pediatric cancer centers assess and address gaps in survivor care, and 3) design interventions to improve engagement in long-term pediatric survivor services. Improvements in survivor care practices for pediatric CCS and interventions promoting long-term care will have the potential to decrease future morbidity and mortality through early detection and treatment of chronic conditions after childhood cancer.