Childhood cancer survivors’ readiness for adult-oriented long-term care in Japan: A cross-sectional survey

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  • 小児がん経験者の成人医療移行への準備状況に関する横断的実態調査

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<p>Background: We conducted a survey of Japanese childhood cancer survivors (CCSs) to determine their readiness for long-term care as adults and their familiarity of the tools for long-term follow-up. Methods: The participants were selected from the membership directory of Heart Link mutual-aid health insurance and the Millefeuille Childhood Cancer Frontiers. We conducted a cross-sectional survey (a self-rated questionnaire) via postal mail. Results: We analyzed 242 completed questionnaires from 132 males and 110 females with a median age of 26 years (from 12 to 47 years). More than half of the CCSs answered “fair or enough understanding” of the explanation of their cancer and their cancer stage/risk, 31% of the CCSs gave the same answer for their risk of late effects, and 45 and 49% answered the same for warning points in daily life and situations in which they need to contact their physicians, respectively. On the other hand, half of the CCSs could not list the names of the anticancer drugs administered to them and 80% did not know the total dose of each drug. Forty-three percent of the CCSs answered “fair or enough understanding” of treatment summary, 18% for the FU diary, and 13% for Japanese long-term FU guidelines. Younger age at onset/childhood solid cancers (some of which were blastoma) and subjective good health state at survey were negatively associated with their familiarity, and high educational achievement (university/graduate school) was positively associated with their familiarity. Conclusions: Familiarity of the tools for long-term follow-up was unexpectedly low in Japan. Special consideration was needed for CCSs with younger age at onset and low educational achievement.</p>

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