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

ABSTRACT

BACKGROUND: Childhood cancer survivors (CCSs) entering adulthood experience different problems, including late therapy-related complications. Long-term follow up (LTFU) is important for early intervention and psychosocial support for CCSs with late complications but it is frequently discontinued. This study aimed (i) to identify clearly the factors responsible for LTFU discontinuation, and (ii) to define the support needs of CCSs. METHODS: From July, 2017 to March, 2019 we conducted a questionnaire survey of 121 CCSs aged ≥ 18 years at the time of the survey to investigate people who have experienced childhood cancer and identify their support needs. This was conducted in cooperation with patient associations throughout Japan. The LTFU levels were determined by CCSs themselves based on their treatment history. Long-term follow-up rates and LTFU discontinuation factors were assessed using the Kaplan-Meier method and the Cox proportional-hazards model. RESULTS: Late complications were the most common problem encountered by CCSs (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' reasons (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" and 60.7% stated "convenience of outpatient visit". CONCLUSIONS: Childhood cancer survivors require support, especially for late complications. It is necessary to continue LTFU, raising LTFU awareness among physicians and CCSs.