Loss to follow‐up of minorities, adolescents, and young adults on clinical trials: A report from the Children's Oncology Group

Abstract

Background:The increasing number of childhood cancer survivors necessitates continued follow-up to monitor for long-term complications. Inequities in loss to follow-up for patients enrolled on pediatric clinical trials have not been well studied. Methods:This was a retrospective study of 21,084 patients residing in the United States enrolled on phase 2/3 and phase 3 Children's Oncology Group (COG) trials between January 1, 2000 and March 31, 2021. Rates of loss to follow-up to COG were evaluated using log-rank tests and multivariable Cox proportional hazards regression models with adjusted hazard ratios (HRs). Demographic characteristics included age at enrollment, race, ethnicity, and zip code level socioeconomic data.Results: Adolescent and young adult (AYA) patients 15-39 years old at diagnosis had an increased hazard of loss to follow-up compared to patients 0-14 years old (HR, 1.89; 95% confidence interval (CI), 1.76-2.02). In the overall cohort, non-Hispanic Blacks were found to have an increased hazard of loss to follow-up compared to non-Hispanic Whites (HR, 1.56; 95% CI, 1.43-1.70). Among AYAs, the highest loss to follow-up rates were among non-Hispanic Blacks (69.8% � 3.1%), patients on germ cell tumor trials (78.2% � 9.2%), and patients living in zip codes with a median household income ≤150% of the federal poverty line at diagnosis (66.7% � 2.4%).Conclusions: AYAs, racial and ethnic minority patients, and those living in lower socioeconomic status areas had the highest rates of loss to follow-up among clinical trial participants. Targeted interventions are warranted to ensure equitable followup and improved assessment of long-term outcomes.

Vulnerable populations in childhood cancer research and clinical care

“…Barriers to minority participation in clinical trials include lacking trust in medical research, limited access to information about available studies, logistical challenges such as transportation and childcare, and a tendency of physicians to be less likely to offer such trials to minority patients 7 . The present study by Puthenpura et al 1 . builds on prior research by demonstrating that, even if minority patients enroll in a trial, they are more likely to be lost to follow‐up.…”

“…In this issue of Cancer , Puthenpura and colleagues present a study entitled, “ Loss to follow‐up of minorities, adolescents and young adults on clinical trials: a report from the Children's Oncology Group ” 1 . The investigators assessed loss to follow‐up among 21,084 individuals with cancer who enrolled on a Children's Oncology Group (COG) phase 2/3 or phase 3 clinical trial between 2000 and 2021.…”

“…Puthenpura et al 1 . surmise that loss to clinical trial follow‐up correlates with loss to long‐term clinical follow‐up.…”

“…With increasing time from the end of cancer therapy, survivors are less likely to remain engaged with their treating cancer center or the cancer system in general 13 . As Puthenpura et al 1 . briefly noted, these survivors might be receiving care from a PCP.…”

“…There are also numerous patient-level factors, such as the patient's psychological response to their cancer diagnosis; relationships between patients, providers, and family; patient attitudes and beliefs regarding clinical trials; and knowledge among AYA that trials exist. 11 It is concerning that Puthenpura et al 1 demonstrated that AYA are also more likely than younger patients to be lost to follow-up after trial enrollment. Further research is needed to elucidate the obstacles to clinical trial follow-up, but the "transition" out of a pediatric cancer center is likely a barrier.…”