Understanding predictors of continued long-term pediatric cancer care across the region: A report from the Consortium for New England Childhood Cancer Survivors

BACKGROUND: Many survivors of childhood cancer do not receive recommended longitudinal oncology care. Factors present at the time of childhood cancer diagnosis may identify patients who are vulnerable to poor adherence to follow-up. METHODS: This cohort of survivors of acute lymphoblastic leukemia (ALL) diagnosed from 1996 to 1999 at seven Consortium for New England Childhood Cancer Survivors institutions was evaluated for attendance at oncology clinics at 5 and 10 years from diagnosis. Demographic, socioeconomic, disease, and treatment characteristics were analyzed as risk factors for nonadherence to follow-up. RESULTS: Of 317 patients, 90% were alive 5 years from diagnosis and 88% of those remained in active follow-up. At 10 years from diagnosis, 88% were alive, 73% of whom continued in active follow-up. Insurance status at diagnosis was significantly associated with adherence at both 5 and 10 years. At 10 years, initial enrollment on therapeutic study was associated with increased attendance and central nervous system (CNS) leukemia with decreased attendance. In multivariable modeling of follow-up at 5 years, patients who were adults were less likely to participate and those with private insurance at diagnosis more likely to participate. At 10 years, insurance status at diagnosis remained a predictor of adherence to follow-up. CONCLUSIONS: In this regional cohort, many patients who are survivors of ALL continue to participate in oncology care at 5 and 10 years from diagnosis. Factors known at diagnosis including insurance status, CNS leukemia, older age, and enrollment on therapeutic study were associated with differential attendance to follow-up visits