Download PDF
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.
› Further Information
   Permissions and Reprints

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.

Keywords

survivors of childhood cancer - health education - information technology - massive open online course

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

Article published online:
24 March 2021

© 2021. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 

  • References

  • 1 Lacour B, Guyot-Goubin A, Guissou S, Bellec S, Désandes E, Clavel J. Incidence of childhood cancer in France: National Children Cancer Registries, 2000-2004. Eur J Cancer Prev 2010; 19 (03) 173-181
    CrossrefPubMedGoogle Scholar
  • 2 Berger C, Trombert-Paviot B, Mitton N. et al. [Childhood cancer incidence and survival rates in the Rhône-Alpes regional paediatric registry 1987-1999]. Arch Pediatr 2006; 13 (02) 121-129
    CrossrefPubMedGoogle Scholar
  • 3 Lacour B, Goujon S, Guissou S. et al. Childhood cancer survival in France, 2000-2008. Eur J Cancer Prev 2014; 23 (05) 449-457
    CrossrefPubMedGoogle Scholar
  • 4 Wallace WH, Blacklay A, Eiser C. et al; Late Effects Committee of the United Kingdom Children's Cancer Study Group (UKCCSG). Developing strategies for long term follow up of survivors of childhood cancer. BMJ 2001; 323 (7307): 271-274
    CrossrefPubMedGoogle Scholar
  • 5 Curry HL, Parkes SE, Powell JE, Mann JR. Caring for survivors of childhood cancers: the size of the problem. Eur J Cancer 2006; 42 (04) 501-508
    CrossrefPubMedGoogle Scholar
  • 6 Hudson MM, Mertens AC, Yasui Y. et al; Childhood Cancer Survivor Study Investigators. Health status of adult long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. JAMA 2003; 290 (12) 1583-1592
    CrossrefPubMedGoogle Scholar
  • 7 Lorenzi M, McMillan AJ, Siegel LS. et al. Educational outcomes among survivors of childhood cancer in British Columbia, Canada: report of the Childhood/Adolescent/Young Adult Cancer Survivors (CAYACS) Program. Cancer 2009; 115 (10) 2234-2245
    CrossrefPubMedGoogle Scholar
  • 8 Castellino SM, Geiger AM, Mertens AC. et al. Morbidity and mortality in long-term survivors of Hodgkin lymphoma: a report from the Childhood Cancer Survivor Study. Blood 2011; 117 (06) 1806-1816
    CrossrefPubMedGoogle Scholar
  • 9 Rueegg CS, Gianinazzi ME, Rischewski J. et al. Health-related quality of life in survivors of childhood cancer: the role of chronic health problems. J Cancer Surviv 2013; 7 (04) 511-522
    CrossrefPubMedGoogle Scholar
  • 10 Chao C, Xu L, Bell E, Cooper R, Mueller L. Long-term Health Outcomes in Survivors of Childhood Cancer Diagnosed Between 1990 and 2000 in a Large US Integrated Health Care System. J Pediatr Hematol Oncol 2016; 38 (02) 123-130
    CrossrefPubMedGoogle Scholar
  • 11 Bagur J, Massoubre C, Casagranda L, Faure-Conter C, Trombert-Paviot B, Berger C. Psychiatric disorders in 130 survivors of childhood cancer: preliminary results of a semi-standardized interview. Pediatr Blood Cancer 2015; 62 (05) 847-853
    CrossrefPubMedGoogle Scholar
  • 12 Abadie A, Massoubre C, Casagranda L. et al. Prevalence of Psychiatric Complications in Young Adults After Childhood Cancer Treatment: Results of the Long-Term Follow-Up Studies in Oncology. J Adolesc Young Adult Oncol 2020; 9 (02) 247-255
    CrossrefPubMedGoogle Scholar
  • 13 Ghim TT. Time to establish multidisciplinary childhood cancer survivorship programs in Korea. Korean J Hematol 2010; 45 (02) 84-87
    CrossrefPubMedGoogle Scholar
  • 14 Eshelman-Kent D, Kinahan KE, Hobbie W. et al. Cancer survivorship practices, services, and delivery: a report from the Children's Oncology Group (COG) nursing discipline, adolescent/young adult, and late effects committees. J Cancer Surviv 2011; 5 (04) 345-357
    CrossrefPubMedGoogle Scholar
  • 15 Rebholz CE, von der Weid NX, Michel G, Niggli FK, Kuehni CE. Swiss Pediatric Oncology Group (SPOG). Follow-up care amongst long-term childhood cancer survivors: a report from the Swiss Childhood Cancer Survivor Study. Eur J Cancer 2011; 47 (02) 221-229
    CrossrefPubMedGoogle Scholar
  • 16 Sadak KT, Bahr TL, Moen C, Neglia JP, Jatoi A. The Clinical and Research Infrastructure of a Childhood Cancer Survivor Program. J Cancer Educ 2015; 30 (03) 471-476
    CrossrefPubMedGoogle Scholar
  • 17 Berger C, El Fayech C, Pacquement H. et al. [Objectives and organization for the long-term follow-up after childhood cancer]. Bull Cancer 2015; 102 (7-8): 579-585
    PubMedGoogle Scholar
  • 18 Sanft T, Denlinger CS, Armenian S. et al. NCCN guidelines insights: survivorship, version 2.2019. J Natl Compr Canc Netw 2019; 17 (07) 784-794
    CrossrefPubMedGoogle Scholar
  • 19 Casagranda L, Trombert-Paviot B, Faure-Conter C, Bertrand Y, Plantaz D, Berger C. Self-reported and record-collected late effects in long-term survivors of childhood cancer: a population-based cohort study of the childhood cancer registry of the Rhône-Alpes region (ARCERRA). Pediatr Hematol Oncol 2013; 30 (03) 195-207
    CrossrefPubMedGoogle Scholar
  • 20 Gianinazzi ME, Essig S, Rueegg CS. et al; Swiss Paediatric Oncology Group (SPOG). Information provision and information needs in adult survivors of childhood cancer. Pediatr Blood Cancer 2014; 61 (02) 312-318
    CrossrefPubMedGoogle Scholar
  • 21 Knijnenburg SL, Kremer LC, van den Bos C, Braam KI, Jaspers MW. Health information needs of childhood cancer survivors and their family. Pediatr Blood Cancer 2010; 54 (01) 123-127
    CrossrefPubMedGoogle Scholar
  • 22 McClellan W, Klemp JR, Krebill H. et al. Understanding the functional late effects and informational needs of adult survivors of childhood cancer. Oncol Nurs Forum 2013; 40 (03) 254-262
    CrossrefPubMedGoogle Scholar
  • 23 Berbis J, Michel G, Baruchel A. et al. Cohort Profile: the French childhood cancer survivor study for leukaemia (LEA Cohort). Int J Epidemiol 2015; 44 (01) 49-57
    CrossrefPubMedGoogle Scholar
  • 24 Berger C, Casagranda L, Faure-Conter C. et al. Long-term follow-up consultation after childhood cancer in the Rhône-Alpes region of France: feedback from adult survivors and their general practitioners. J Adolesc Young Adult Oncol 2017; 6 (04) 524-534
    CrossrefPubMedGoogle Scholar
  • 25 Robison LL, Armstrong GT, Boice JD. et al. The Childhood Cancer Survivor Study: a National Cancer Institute-supported resource for outcome and intervention research. J Clin Oncol 2009; 27 (14) 2308-2318
    CrossrefPubMedGoogle Scholar
  • 26 Dumas A, Berger C, Auquier P. et al. Educational and occupational outcomes of childhood cancer survivors 30 years after diagnosis: a French cohort study. Br J Cancer 2016; 114 (09) 1060-1068
    CrossrefPubMedGoogle Scholar
  • 27 Liyanagunawardena TR, Williams SA. Massive open online courses on health and medicine: review. J Med Internet Res 2014; 16 (08) e191-e191
    CrossrefPubMedGoogle Scholar
  • 28 Productions A. Teaser Childhood Cancer Living well, after. Accessed September 4, 2020 at: https://vimeo.com/advita/bamoocgb
    PubMedGoogle Scholar
  • 29 Saint-Etienne UJM. Pedagogy University Department. Accessed May 19, 2020 at: https://sup-ujm.univ-st-etienne.fr/fr/activites/claroline-connect.html
    PubMedGoogle Scholar
  • 30 Study FCCS. Contact information for follow-up consultations. Accessed May 19, 2020 at: https://fccss.fr/ma-sante/coordonnees-des-consultations-de-suivi/
    PubMedGoogle Scholar
  • 31 Poulalhon C, Vignon L, Idbrik L. et al. Data resource profile: the French childhood cancer observation platform (CCOP). Int J Epidemiol 2020; 49 (05) 1434-1435k
    CrossrefPubMedGoogle Scholar
  • 32 Steliarova-Foucher E, Stiller C, Lacour B, Kaatsch P. International Classification of Childhood Cancer, third edition. Cancer 2005; 103 (07) 1457-1467
    CrossrefPubMedGoogle Scholar
  • 33 Berry DL, Blonquist TM, Nayak MM, Grenon N, Momani TG, McCleary NJ. Self-care support for patients with gastrointestinal cancer: iCancerHealth. Appl Clin Inform 2018; 9 (04) 833-840
    Article in Thieme ConnectPubMedGoogle Scholar
  • 34 Kadan-Lottick NS, Robison LL, Gurney JG. et al. Childhood cancer survivors' knowledge about their past diagnosis and treatment: Childhood Cancer Survivor Study. JAMA 2002; 287 (14) 1832-1839
    CrossrefPubMedGoogle Scholar
  • 35 Gramatges MM, Bonaduce de Nigris F, King J, Horowitz ME, Fordis M, Poplack DG. Improving childhood cancer survivor care through web-based platforms. Oncology (Williston Park) 2018; 32 (01) e1-e10
    PubMedGoogle Scholar
  • 36 Pottier E, Boulanouar L, Bertrand M. et al. A MOOC about bariatric surgery improves knowledge and promotes patients' soft skills. Obes Surg 2020; 30 (04) 1600-1604
    CrossrefPubMedGoogle Scholar
  • 37 Zabih V, Kahane A, O'Neill NE, Ivers N, Nathan PC. Interventions to improve adherence to surveillance guidelines in survivors of childhood cancer: a systematic review. J Cancer Surviv 2019; 13 (05) 713-729
    CrossrefPubMedGoogle Scholar
  • 38 Blaauwbroek R, Barf HA, Groenier KH. et al. Family doctor-driven follow-up for adult childhood cancer survivors supported by a web-based survivor care plan. J Cancer Surviv 2012; 6 (02) 163-171
    CrossrefPubMedGoogle Scholar
  • 39 Williamson RS, Cherven BO, Gilleland Marchak J. et al. Meaningful use of an electronic personal health record (ePHR) among pediatric cancer survivors. Appl Clin Inform 2017; 8 (01) 250-264
    PubMedGoogle Scholar
  • 40 Poplack DG, Fordis M, Landier W, Bhatia S, Hudson MM, Horowitz ME. Childhood cancer survivor care: development of the Passport for Care. Nat Rev Clin Oncol 2014; 11 (12) 740-750
    CrossrefPubMedGoogle Scholar
  • 41 Moody L, Turner A, Osmond J, Hooker L, Kosmala-Anderson J, Batehup L. Web-based self-management for young cancer survivors: consideration of user requirements and barriers to implementation. J Cancer Surviv 2015; 9 (02) 188-200
    CrossrefPubMedGoogle Scholar
  • 42 Sharp LK, Carvalho P, Southward M. et al. Electronic personal health records for childhood cancer survivors: an exploratory study. J Adolesc Young Adult Oncol 2014; 3 (03) 117-122
    CrossrefPubMedGoogle Scholar
  • 43 Carolan-Olah M, Sayakhot P. A randomized controlled trial of a web-based education intervention for women with gestational diabetes mellitus. Midwifery 2019; 68: 39-47
    CrossrefPubMedGoogle Scholar
  • 44 Scalzi LV, Hollenbeak CS, Mascuilli E, Olsen N. Improvement of medication adherence in adolescents and young adults with SLE using web-based education with and without a social media intervention, a pilot study. Pediatr Rheumatol Online J 2018; 16 (01) 18
    CrossrefPubMedGoogle Scholar
  • 45 Ghajar-Khosravi S, Tarlo SM, Liss GM. et al. Development of a web-based, work-related asthma educational tool for patients with asthma. Can Respir J 2013; 20 (06) 417-423
    CrossrefPubMedGoogle Scholar
  • 46 Arguel A, Lau AY, Dennis S, Liaw ST, Coiera E. An internet intervention to improve asthma management: rationale and protocol of a randomized controlled trial. JMIR Res Protoc 2013; 2 (02) e28
    CrossrefPubMedGoogle Scholar
  • 47 Frith J. Fall prevention: empowering people through online education. Ann Fam Med 2017; 15 (05) 482
    CrossrefPubMedGoogle Scholar
  • 48 Reeves D, Howells K, Sidaway M. et al. The cohort multiple randomized controlled trial design was found to be highly susceptible to low statistical power and internal validity biases. J Clin Epidemiol 2018; 95: 111-119
    CrossrefPubMedGoogle Scholar