Shared barriers and facilitators to enrollment of adolescents and young adults on cancer clinical trials

Nupur Mittal,David R Freyer,Michael Roth,Varun Monga,Viswatej Avutu,Aniket Saha

doi:10.1038/s41598-022-07703-5

Abstract

Adolescent and young adult (AYA) enrollment in cancer clinical trials (CCT) is suboptimal. Few studies have explored site level barriers and facilitators to AYA enrollment on CCTs and the efficacy of interventions to enhance enrollment. A cross sectional survey was developed by the COG AYA Oncology Discipline Committee Responsible Investigator (RI) Network to identify perceived barriers and facilitators to enrollment, as well as opportunities to improve enrollment. Associations of barriers and facilitators to enrollment with program demographics were assessed. The survey was sent to all AYA RI Network members (n = 143) and quantitative and thematic analyses were conducted. The overall response rate was 42% (n = 60/143). Participants represented diverse institutions based on size, presence or absence of dedicated AYA programs, and proximity and relationship between pediatric and medical oncology practices within the institution. The most frequently cited barriers to enrolling AYAs in CCTs were administrative logistical issues (45%), disparate enrollment practices (42%) and communication issues (27%) between pediatric and medical oncology and perceived limited trial availability (27%). The most frequently reported facilitators to enrollment included having strong communication between pediatric and medical oncology (48%), having a supportive research infrastructure (35%) and the presence of AYA champions (33%). Many barriers and facilitators were similar across institutions and AYA program types. Shared barriers and facilitators to AYA CCT enrollment exist across the landscape of cancer care settings. Interventions aimed at increasing coordination between pediatric and medical oncology clinical trials offices and providers have high potential to improve site-level AYA enrollment.

Highlights

Adolescent and young adult (AYA) enrollment in cancer clinical trials (CCT) is suboptimal
In 2018, the Children’s Oncology Group (COG) AYA Oncology Discipline Committee developed an international network of AYA Responsible Investigators (RIs) consisting of > 140 individuals from demographically and geographically diverse sites that serve a variety of distinct roles at their respective institutions such as physicians, nurse practitioners, nurse navigators and research staff
In this survey of COG sites with designated AYA RIs, several shared barriers and facilitators to AYA enrollment were identified that appeared to be independent of institutional demographics and infrastructure

Summary

Introduction

Adolescent and young adult (AYA) enrollment in cancer clinical trials (CCT) is suboptimal. A cross sectional survey was developed by the COG AYA Oncology Discipline Committee Responsible Investigator (RI) Network to identify perceived barriers and facilitators to enrollment, as well as opportunities to improve enrollment. The most frequently cited barriers to enrolling AYAs in CCTs were administrative logistical issues (45%), disparate enrollment practices (42%) and communication issues (27%) between pediatric and medical oncology and perceived limited trial availability (27%). The reasons for limited AYA CCT enrollment, even amongst the ones eligible for trials while not well understood, have been hypothesized in recent r eviews[5–7] These include global issues such as the perception of limited availability of relevant CCTs, regional issues such as lack of referral of AYA patients to centers with National Cancer Institute (NCI)-CCTs and institutional-level issues such as not activating CCTs due to the regulatory burden and cost of study activation and conduct. Institutions included free-standing children’s hospitals, sites with pediatric and medical oncology on shared or separate campuses, and sites located in community and urban settings

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Conclusion