Department of Pediatric Hematology and Oncology, University-Hospital, Saint-Etienne, France.
UMR-S1153, Inserm, Paris Descartes University, Paris, France.
Appl Clin Inform. 2021 Mar;12(2):237-244. doi: 10.1055/s-0041-1725185. Epub 2021 Mar 24.
Today, in France, it is estimated that 1 in 850 people aged between 20 and 45 years has been treated for childhood cancer, which equals 40,000 to 50,000 people. As late effects of the cancer and its treatment affect a large number of childhood cancer survivors (CCS) and only 30% of them benefit from an efficient long-term follow-up care for prevention, early detection, and treatment of late effects, health education of CCS represents a challenge of public health.
Massive open online courses (MOOCs) are a recent innovative addition to the online learning landscape. This entertaining and practical tool could easily allow a deployment at a national level and make reliable information available for all the CCS in the country, wherever they live.
The MOOC team brings together a large range of specialists involved in the long-term follow-up care, but also associations of CCS, video producers, a communication consultant, a pedagogical designer, a cartoonist and a musician. We have designed three modules addressing transversal issues (lifestyle, importance of psychological support, risks of fertility problems) and eight modules covering organ-specific problems. Detailed data on childhood cancer treatments received were used to allocate the specific modules to each participant.
This paper presents the design of the MOOC entitled "Childhood Cancer, Living Well, After," and how its feasibility and its impact on CCS knowledge will be measured. The MOOC about long-term follow-up after childhood cancer, divided into 11 modules, involved 130 participants in its process, and resulted in a 170-minute film. The feasibility study included 98 CCS (31 males vs. 67 females; < 0.0001).
Such personalized, free, and online courses with an online forum and a possible psychologist consultation based on unique characteristics and needs of each survivor population could improve adherence to long-term follow-up without alarming them unnecessarily.
如今，在法国，据估计，年龄在 20 至 45 岁之间的人群中，每 850 人就有 1 人接受过儿童癌症治疗，这相当于有 4 万到 5 万人。由于癌症及其治疗的晚期影响会影响到大量儿童癌症幸存者（CCS），而只有 30%的人受益于有效的长期随访护理，以预防、早期发现和治疗晚期影响，因此，CCS 的健康教育是公共卫生的一项挑战。
大规模开放在线课程（MOOC）是在线学习领域的一项创新补充。这种有趣且实用的工具可以轻松实现全国范围内的部署，并为全国所有的 CCS 提供可靠的信息，无论他们身在何处。
MOOC 团队汇集了一大批参与长期随访护理的专家，还包括 CCS 协会、视频制作人员、沟通顾问、教学设计专家、漫画家以及音乐家。我们设计了三个模块，分别针对跨领域问题（生活方式、心理支持的重要性、生育问题的风险）和八个模块涵盖器官特异性问题。我们使用详细的儿童癌症治疗数据来为每个参与者分配特定的模块。
本文介绍了题为“儿童癌症，生活得好，之后”的 MOOC 的设计，以及如何衡量其可行性及其对 CCS 知识的影响。该 MOOC 涵盖了儿童癌症治疗后的长期随访问题，分为 11 个模块，有 130 名参与者，最终制作成了一部时长 170 分钟的电影。可行性研究包括 98 名 CCS（31 名男性，67 名女性；<0.0001）。
这种个性化、免费、在线的课程，加上在线论坛和根据每个幸存者群体的独特特征和需求提供的可能的心理学家咨询，可能会改善对长期随访的依从性，而不会不必要地引起恐慌。
