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

Authors :
Jean-Hugues Dalle
Bernard Dal Molin
Muriele Schneider
Michèle Dal Molin
Arnauld Garcin
Virginie Lanlo
Sylvie Martin-Beuzart
Jacqueline Clavel
Pascale Guillot
Charlotte Demoor-Goldschmidt
Claire Berger
Hélène Sudour-Bonnange
Olivier Mounier
Léonie Casagranda
B. Fresneau
Cecile Teinturier
Catherine Massoubre
School of Electrical and Computer Engineering - Georgia Insitute of Technology (ECE GeorgiaTech)
Georgia Institute of Technology [Atlanta]
Centre Hospitalier Universitaire de Saint-Etienne [CHU Saint-Etienne] (CHU ST-E)
Centre Hospitalier Régional Universitaire [Lille] (CHRU Lille)
Centre Régional de Lutte contre le Cancer Oscar Lambret [Lille] (UNICANCER/Lille)
Université de Lille-UNICANCER
Hôpital Robert Debré Paris
Hôpital Robert Debré
Centre de recherche en épidémiologie et santé des populations (CESP)
Université de Versailles Saint-Quentin-en-Yvelines (UVSQ)-Université Paris-Sud - Paris 11 (UP11)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Hôpital Paul Brousse-Institut National de la Santé et de la Recherche Médicale (INSERM)
Centre hospitalier universitaire de Nantes (CHU Nantes)
Biologie Intégrative du Tissu Osseux (LBTO)
Université Jean Monnet - Saint-Étienne (UJM)-Institut National de la Santé et de la Recherche Médicale (INSERM)
Université de Versailles Saint-Quentin-en-Yvelines (UVSQ)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Hôpital Paul Brousse-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris-Saclay
Equipe 7 : EPICEA - Epidémiologie des cancers de l'enfant et de l'adolescent (CRESS - U1153)
Centre de Recherche Épidémiologie et Statistique Sorbonne Paris Cité (CRESS (U1153 / UMR_A_1125 / UMR_S_1153))
Conservatoire National des Arts et Métiers [CNAM] (CNAM)
HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris Cité (UPCité)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE)-Conservatoire National des Arts et Métiers [CNAM] (CNAM)
HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris Cité (UPCité)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE)
Registre National des Hémopathies malignes de l'Enfant (RNHE)
Institut de Veille Sanitaire (INVS)-Institut National de la Santé et de la Recherche Médicale (INSERM)
Registre National des Cancers de l'Enfant - National Registry of Childhood Cancers [Villejuif & CHU Nancy] (RNCE)
Centre Hospitalier Régional Universitaire de Nancy (CHRU Nancy)-Institut National de la Santé et de la Recherche Médicale (INSERM)
Institut National de la Santé et de la Recherche Médicale (INSERM)
Source :
Appl Clin Inform, Applied Clinical Informatics, Applied Clinical Informatics, 2021, 12 (02), pp.237-244. ⟨10.1055/s-0041-1725185⟩
Publication Year :
2021
Publisher :
Georg Thieme Verlag KG, 2021.

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 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.

Details

ISSN :
18690327
Volume :
12
Database :
OpenAIRE
Journal :
Applied Clinical Informatics
Accession number :
edsair.doi.dedup.....3ff1ef4cf9df8161c1416dfddf6e658d
Full Text :
https://doi.org/10.1055/s-0041-1725185