Department of Pediatric Oncology, Johns Hopkins School of Medicine, Baltimore, Maryland.
Johns Hopkins University School of Education, Baltimore, Maryland.
Pediatr Blood Cancer. 2019 Jan;66(1):e27427. doi: 10.1002/pbc.27427. Epub 2018 Aug 29.
Neurocognitive deficits are common after childhood cancer and impact academic performance. Parents need to be knowledgeable of long-term complications impacting school and the resources necessary to support educational achievement. The oncology team plays an important role in preparing parents for the challenges of returning to school after treatment.
An online survey developed by parents and stakeholders was used to assess parent experiences and preferences associated with oncology team support around neurocognitive deficits and school transition. Recruitment included social media sites, foundation contacts, and clinic/event flyers. Topics included information content, timing, and frequency of information; and utility or perceived value of information. Inclusion criteria included respondent identifying as a parent (caregiver) of child treated for cancer who has returned to school.
Surveys from 203 parents were completed representing diverse geographic locations. Nearly half (48%) did not recall receiving information about neurocognitive deficits. The most frequently reported time to receive this information was at diagnosis, but parents reported a need for conversations throughout the cancer trajectory, especially at transition to survivorship and school reentry. In addition, half of the parents (51%) felt inadequately prepared for the return to school. Information about neuropsychological testing, resources for learning difficulties, educational terms, and legal rights related to school services were the topics most inadequately provided.
Parents feel inadequately prepared by their oncology team for their child's return to school. Research is needed to identify effective oncology team approaches to fill the gaps in knowledge around school reentry after cancer treatment.
神经认知缺陷在儿童癌症后很常见，会影响学业成绩。家长需要了解影响学校的长期并发症，以及支持学业成就所需的资源。肿瘤团队在为治疗后重返学校的挑战做好家长准备方面发挥着重要作用。
使用父母和利益相关者开发的在线调查来评估与神经认知缺陷和学校过渡相关的肿瘤团队支持的父母体验和偏好。招募包括社交媒体网站、基金会联系人和诊所/活动传单。主题包括信息内容、信息的时间和频率；以及信息的实用性或感知价值。纳入标准包括受访者为接受癌症治疗后已返校的孩子的父母（照顾者）。
完成了 203 名父母的调查，代表了不同的地理位置。近一半（48%）的人不记得收到过有关神经认知缺陷的信息。最常报告收到此信息的时间是在诊断时，但家长报告说需要在整个癌症治疗过程中进行对话，尤其是在过渡到生存和重返学校时。此外，一半的家长（51%）觉得自己重返学校的准备不足。有关神经心理测试、学习困难资源、教育术语以及与学校服务相关的法律权利的信息提供得最不足。
家长感到肿瘤团队对孩子重返学校的准备不足。需要研究确定有效的肿瘤团队方法，以填补癌症治疗后重返学校方面知识差距。
