Appl Clin Inform 2021; 12(02): 237-244
DOI: 10.1055/s-0041-1725185
Research Article

Personalized Massive Open Online Course for Childhood Cancer Survivors: Behind the Scenes

Claire Berger
1  Department of Pediatric Hematology and Oncology, University-Hospital, Saint-Etienne, France
2  UMR-S1153, Inserm, Paris Descartes University, Paris, France
,
Léonie Casagranda
1  Department of Pediatric Hematology and Oncology, University-Hospital, Saint-Etienne, France
3  Host Research Team EA4607 SNA-EPIS, Jean Monnet University of Saint-Etienne, PRES Lyon, Saint-Etienne, France
,
Hélène Sudour-Bonnange
4  Department of Pediatric Oncology and AYA Unit Oscar Lambret Institute, Lille, France
,
Catherine Massoubre
5  Department of Psychiatry, University-Hospital of Saint-Etienne, Saint-Etienne, France
,
Jean-Hugues Dalle
6  Department of Immunology and Hematology, Robert Debré Hospital, GH APHP-Nord Université de Paris, France
,
Cecile Teinturier
7  Department of Pediatric Endocrinology and diebetology, Bicêtre Hospital, Paris Sud University – Kremlin Bicêtre, France
8  Inserm U 1018, CESP, Cancer and Radiation Team, University of Paris-Saclay, Paris-Sud University, Villejuif, France
,
Sylvie Martin-Beuzart
9  Department of Ophtalmology, Lagny-sur-Marne, France
,
Pascale Guillot
10  Department of Rhumatology, University Hospital Nantes, Nantes, France
,
Virginie Lanlo
11  Consultant, Communication and Pedagogical Designer Specialized in MOOC, Pantin, France
,
Muriele Schneider
12  Physical Medicine and Rehabilitation, SMAEC, Miribel, France
,
Bernard Dal Molin
13  Advita Productions, Grenoble, France
,
Michèle Dal Molin
13  Advita Productions, Grenoble, France
,
Olivier Mounier
14  Department of Informatics, University Jean Monnet, Saint-Etienne, France
,
Arnauld Garcin
3  Host Research Team EA4607 SNA-EPIS, Jean Monnet University of Saint-Etienne, PRES Lyon, Saint-Etienne, France
15  Department of Research, University Hospital, Saint-Etienne, Cedex, France
,
Brice Fresneau
8  Inserm U 1018, CESP, Cancer and Radiation Team, University of Paris-Saclay, Paris-Sud University, Villejuif, France
16  Department of Pediatric Oncology, Gustave Roussy, University of Paris-Saclay, Villejuif, France
,
Jacqueline Clavel
2  UMR-S1153, Inserm, Paris Descartes University, Paris, France
,
Charlotte Demoor-Goldschmidt
8  Inserm U 1018, CESP, Cancer and Radiation Team, University of Paris-Saclay, Paris-Sud University, Villejuif, France
17  Department of Pediatric Hematology and Oncology, University-Hospital of Angers, Angers, France
› Author Affiliations
Funding This study received its financial support from National Institute of Cancer (INCa), the league against cancer and the ARC Foundation for Research Against Cancer, INCa-ARC-Ligue_11902.

Abstract

Background 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.

Objectives 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.

Methods 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.

Results 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; p < 0.0001).

Conclusion 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.

Protection of Human and Animal Subjects

The study was performed in compliance with the World Medical Association Declaration of Helsinki on ethical principles for medical research involving human subjects, and was reviewed by the Ethics Committee of the University Hospital of Saint-Etienne on September 13, 2018, from the French Expertise Committee for Research, Studies, and Evaluations in the Field of Health (CEREES) on February 14, 2019 and from the French National Commission for Data Protection and Liberties on August 2, 2019.


Supplementary Material



Publication History

Received: 29 September 2020

Accepted: 20 January 2021

Publication Date:
24 March 2021 (online)

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