Division of Pediatric Hematology/Oncology, Department of Pediatrics, Washington University School of Medicine, St. Louis, Missouri.
Program in Occupational Therapy, Washington University School of Medicine, St. Louis, Missouri.
Pediatr Blood Cancer. 2019 Apr;66(4):e27547. doi: 10.1002/pbc.27547. Epub 2018 Nov 8.
Adolescent and young adult (AYA) survivors of cancer and central nervous system (CNS) tumors endure major life disruptions with their diagnosis, treatment, and the burden of emerging learning difficulties. Survivors and their parents often struggle to obtain more academic support as survivors transition through school. This study explored the knowledge and experience survivors and their parents need as they progress through school to college.
This cross-sectional study examined childhood cancer and CNS tumor survivors, aged 11 to 21 years, with a known learning difficulty (Individual Education Plan, 504 Plan) and their parents. We assessed participants' knowledge of and experience with transition planning for postsecondary education and independent living.
Ninety-two AYA survivors and parents (45 survivors, 47 parents) completed the survey. High school-aged survivors described their learning difficulties better than middle school-aged survivors. Survivors estimated their abilities higher than did their parents. Despite a majority of survivors expecting to attend college, 68.5% of survivors and 57.9% of parents were not certain how to get special accommodations for standardized college entrance exams. Only 20.8% of survivors were aware of what a transition plan includes. Parents understood the transition planning process and when it should begin better than the students (P = 0.001), but many parents (40.0%) were still unsure.
AYA survivors and parents lack knowledge necessary to successfully transition to their goals after high school. Greater education is needed.
青少年和年轻成人（AYA）癌症和中枢神经系统（CNS）肿瘤幸存者在诊断、治疗和新出现的学习困难的负担下，经历了重大的生活中断。幸存者及其父母在幸存者通过学校过渡到大学时，往往难以获得更多的学业支持。本研究探讨了幸存者及其父母在学校过渡到大学时所需的知识和经验。
本横断面研究调查了患有儿童癌症和 CNS 肿瘤的 11 至 21 岁幸存者，他们有已知的学习困难（个别教育计划、504 计划）和他们的父母。我们评估了参与者对高等教育和独立生活的过渡规划的知识和经验。
92 名 AYA 幸存者和父母（45 名幸存者，47 名父母）完成了调查。高中年龄的幸存者比初中年龄的幸存者更能描述自己的学习困难。幸存者对自己的能力估计高于父母。尽管大多数幸存者希望上大学，但 68.5%的幸存者和 57.9%的父母不确定如何为标准化大学入学考试获得特殊住宿。只有 20.8%的幸存者知道过渡计划包括什么。父母比学生更了解过渡规划过程以及何时开始（P=0.001），但许多父母（40.0%）仍不确定。
AYA 幸存者及其父母缺乏成功过渡到高中毕业后目标所需的知识。需要更多的教育。
