Booklet explaining cancer to people with intellectual disabilities
The booklet "Lucie Is Treated for Cancer" comprises 47 adapted images and texts that clearly and simply explain the cancer diagnostic and therapeutic journey to people with intellectual disabilities. The booklet was created in 2014-2016 with the support of the Allianz ADPS Partner Foundation. It has been distributed since 2017 thanks to support from the Terre Plurielle Foundation, the Comité d'Action Citoyennes de Bouygues Bâtiment Sud Est, and the Allianz ADPS Partner Foundation. "Lucie Is Treated for Cancer" was presented to the "Droit des Usagers du Système de Santé" commission and approved by the ARS. The booklet is intended for professionals in health care institutions and medico-social institutions for people with intellectual disabilities as well as patients’ families.
Images du livret Lucie est soignée pour un cancer Equipe qui a réalisé le livret Labélisation du livret par l'ARS (Janvier 2019)
Congresses
Oral and poster presentations in national (France) and international congresses on Cancer, Intellectual disability, Down syndrome, Psycho-oncology and Genetics.
S. Habib-Hadef (ARC) au congrès de Berlin Poster Oncodefi, au Congrès National du Cancéropôle
Formation, teaching
Oncodéfi gives teachings on cancer and intellectual disability in France in universities, hospitals and associations.
Publications
Books and book chapters
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Cancer in Children and Adults with intellectual disabilities. Current research aspects. Satgé D, Merrick J, Eds Nova Science Publishers New York, Mars 2011 (315 p)
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Cancers in persons with intellectual deficiency: current data. Satgé D, Sasco AJ, Azema B, Culine S. In: Ford TE, Ed. New cancer research developments. Nova Sciences Publisher New York 2009 pp 101-138
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Cancers des personnes déficientes intellectuelles. Satgé D. Chapitre dans l'ouvrage d'expertise collective INSERM: Déficiences intellectuelles 2016 pp 1115-1132. Chapitre accessible gratuitement par le lien:
http://www.inserm.fr/thematiques/sante-publique/expertises-collectives
Articles and congresses
Satgé D, Nishi M, Sirvent N, Vekemans M, Chenard MP, Barnes A. A Tumor Profile in Patau Syndrome (Trisomy 13). Am J Med Genet 2017 Aug;173(8):2088-2096. doi: 10.1002/ajmg.a.38294
Satgé D, Nishi M, Sirvent N, Vekemans M. A tumor profile in Edwards syndrome (trisomy 18). Am J Med Genet C Semin Med Genet. 2016;172(3):296-306
Trétarre B, Bourgarel S, Stoebner-Delbarre A, Jacot W, Bessaoud F, Satgé D. Breast cancer and screening in persons with an intellectual disability living in institutions in France. J Intellect Disabil Res. 2017;61(3):266-278
Satgé D, Kempf E, Dubois JB, Nishi M, Trédaniel J. Challenges in Diagnosis and Treatment of Lung Cancer in People with Intellectual Disabilities: Current State of Knowledge. Lung Cancer Int. 2016;2016:6787648 https://www.hindawi.com/journals/lci/2016/6787648/
Tuffrey-Wijne I, McLaughlin D, Curfs L, Dusart A, Hoenger C, McEnhill L, Read S, Ryan K, Satgé D, Straßer B, Westergård BE, Oliver D. Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A White Paper from the European Association of Palliative Care. Palliat Med. 2016;30(5):446-55 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4838171/
Bourgarel S, Trétarre B, Satgé D, Stoebner-Delbarre A. Le cancer colorectal et son dépistage chez les personnes déficientes intellectuelles vivant en institution en France. Oncologie 2015 DOI 10.1007/s10269-015-2532-1
Kiani R, Vahabzadeh A, Hepplewhite EA, Abbas M, Finnamore T, Bhaumik S, Satgé D. Overcoming challenges in diagnosing and treating cancers in people with intellectual disability: a case analysis. Tizard Learning Disability Review 2014;19:51-8
Satgé D, Sauleau EA, Jacot W, Raffi F, Azéma B, Bouyat JC, El Hage Assaf N. Age and stage at diagnosis: a hospital series of 11 women with intellectual disability and breast carcinoma. BMC Cancer. 2014;14:150 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3943992/
Satgé D, Dimoux-Dime G, Godard W, De Fréminville B. Adolescent girl with Down syndrome and lumbar cutaneous melanoma. Pediatr Dermatol 2014;31:108-9
Satgé D, Salmeron S, Homsi T, Réthoré M-O, Tredaniel J, Adenocarcinoma of the lung in Down syndrome: First clinical report. Tumori 2013;99: e169-e171
Satgé D, Leduc B, Raffi F, Roux E. Adenocarcinoma of the Right Breast in a Man with Intellectual Disability, Case Reports in Oncological Medicine 2013 Article ID 968035, 3 pages https://www.hindawi.com/journals/crionm/2013/968035/
Satgé D, Stiller CA, Rutkowski S, von Bueren AO, Lacour B, Sommelet D, Nishi M, Massimino M, Garré ML, Moreno F, Hasle H, Jakab Z, Greenberg M, von der Weid N, Kuehni C, Zurriaga O, Vicente ML, Peris-Bonet R, Benesch M, Vekemans M, Sullivan SG, Rickert C. A very rare cancer in Down syndrome: medulloblastoma. Epidemiological data from 13 countries. J Neurooncol 2013;112:107-14
Satgé D, Clémenson P, Nishi M, Clémenson A, Hennequin M, Pacaut C, Mortier J, Culine S. A mucoepidermoid carcinoma in a young man with intellectual disability. Review of oral cancer in people with intellectual disability. Oral Surgery Oral Medicine Oral Pathology Oral Radiology 2013;115:e22-7
Satgé D, Nishi M, Culine S, Hennequin M. Awareness on oral cancer in people with intellectual disability. Oral Oncol 2012;48: e44-e45 http://www.oraloncology.com/article/S1368-8375(12)00233-3/pdf
Satgé D, Vekemans M. Down syndrome patients are less likely to develop some (but not all) malignant solid tumours. Clinical Genetics 2011;79:289-90
Satgé D, Merrick-Kenig E, Kandel I, Morad M, Merrick J. Cancer mortality in residential care centers for persons with intellectual disability in Israel 1991-2005. Int J Child Health Hum Dev 2010;3:213-28
Kiani R, Tyrer F, Shaikh A, Satgé D. Cancer deaths in people with moderate to profound intellectual disabilities: the Leicestershire experience 1993-2006. Int J Child Health Hum Dev 2010;3:215-21
Vérité C, Satgé D, Rullier A, Taine L, Saura R, Rooryck C, Arveiler B, Perel Y, Lacombe D. Spindle cell rhabdomyosarcoma and intellectual disability in a child with constitutional subtelomeric 13q deletion and 15q trisomy. Int J Child Health Hum Dev 2010;3:231-36
Sullivan SG, Satgé D, Willis DS. Cervical cancer surveillance in women with learning disabilities. Int J Child Health Hum Dev 2010;3:157-63
Satgé D, De Lonlay P. A review of neoplasms in persons with intellectual disability related to inherited metabolic disorders. Int J Child Health Hum Dev 2010;3:165-71
Documentation website
A large body of literature containing more than one thousand articles on cancer and intellectual disability and accumulated for more than 20 years will be synthesized and progressively distributed online via the website www.oncodefi.net. This site will give information on the frequency and distribution of cancers and on cancer treatment, taking into account particular features of genetic and non-genetic conditions associated with intellectual disability.
