Background: Long-term follow up in adulthood after childhood cancer therapy is particularly important because of the risk of late effects, and information on the rate of continuing hospital visits by childhood cancer survivors (CCS) is also important for the planning of studies on the risk of late effects.
Methods: The rate of continuing hospital visits ("long-term follow up") in 1,252 cases registered in the multicenter Japan Association of Childhood Leukemia Study on Acute Lymphoblastic Leukemia (JACLS ALL-02) was investigated using data from its electronic data capture (EDC) system, including case number, date of diagnosis, date of therapy completion, date of birth, sex, survival or death, date of death, date of last outcome confirmation, and facility code. EDC entries of confirmed survival or death during the 2 years preceding the data lock represented continuing visitors, and the number of those cases, divided by the total number of cases (excluding cases of confirmation of death prior to those 2 years), was calculated as the proportion of continuing visitors (PCV).
Results: The PCV for survivors of childhood acute lymphoblastic leukemia was found to decline over time from diagnosis. For subjects aged 21-29 years who were ≥9 years from diagnosis, PCV was approximately 30% overall, representing 23.5% for men and 41.8% for women, thus indicating a gender difference.
Conclusions: Further studies may be necessary to assess whether CCS who stopped visiting childhood cancer treatment facilities, actually received therapeutic intervention or appropriate screening for late effects as adults.
Keywords: adult health care; childhood cancer survivor; hospital visit; long-term follow up; transition.
© 2018 Japan Pediatric Society.