A questionnaire study of support for adult survivors of childhood cancer.

BACKGROUND Childhood cancer survivors (CCS) entering adulthood experience different problems, including late therapy-related complications. While long-term follow-up (LTFU) is important for early intervention and psychosocial support for CCS with late complications, it is frequently discontinued. This study aimed to (1) clearly identify the factors responsible for LTFU discontinuation and (2) define support needs of CCS. METHODS We conducted a questionnaire survey from July, 2017 to March, 2019 of 121 CCS aged ≥18 years at the time of the survey to cooperate with patient associations throughout Japan to investigate people who have experienced childhood cancer and identify their support needs. LTFU levels were determined by CCS themselves based on their treatment history. LTFU rates and LTFU discontinuation factors were assessed using the Kaplan-Meier method and Cox proportional-hazards model. RESULTS Late complications were the most common problem encountered by CCS (80%). The most common support need was "explanation of late complications by a physician," reported by 86.9% of respondents. The rate of LTFU continuation decreased over time. The LTFU was discontinued both for physicians' (35.6%) and patients' reasons (64.4%). Not knowing the extent or level of one's LTFU was reported to be an independent factor (p < 0.05) preventing LTFU continuation. As necessary support to continue LTFU, 67.9% of respondents stated the need for "explanation of LTFU by a doctor," while 60.7% reported "convenience of outpatient visits." CONCLUSIONS CCS require support, especially in terms of late complications, and to continue LTFU, raising LTFU awareness among physicians and CCS is necessary.