2026 Volume 63 Issue 2 Pages 172-179
A cross-sectional survey was conducted regarding feedback on the usage experience of the Revised “Follow-up Notebook” (notebook) developed by the Japan Children’s Cancer Group (JCCG) Long-Term Follow-up Committee. The participants were childhood cancer survivors and their families who received notebooks and physicians at pediatric cancer treatment facilities. The researchers asked, “Is the Notebook useful for post-treatment follow-up?”, “Does it increase patients’ awareness of health management?”, “Is it easy to use?”, “When is the best timing to give it to the patient?”, and asked about the need for improvements in each notebook section. The survey participants were 21 childhood cancer survivors (CCS), 83 family members, and 36 physicians. Among the CCS, 52% were men, and 89% had completed treatment. The average age of the CCS during the survey was 19.6±2.2 years, and 7.0±3.1 years had passed since cancer treatment completion. Regarding their experience using the notebook, >80% of families and physicians of CCS answered that the notebook was “useful for progress monitoring,” “increases awareness of health management,” and “easy to use.” Regarding the appropriate timing for providing the notebook, the most common response from all participants was “upon discharge.” Approximately 30% of patients and families selected “at diagnosis,” whereas none of physicians chose such timing.
Regarding the appropriate timing of distribution, CCS and their family members preferred earlier receipt, and the resulting discrepancy should be addressed.
We will continue to develop digital content to reduce the burden of recording information and realize earlier distribution.
