This page is under maintenance.
A French version is available.
We apologize for any inconvenience and thank you for your understanding.

 

 

"Lucie Is Treated for Cancer": Explaining cancer to people with intellectual disability

The booklet "Lucie Is Treated for Cancer" includes 47 pictures and adapted language to explain cancer diagnosis and cancer treatment to persons with intellectual disability. It was prepared in 2014-2016 with the support of the Foundation ADPS-Partenaire d'Allianz. The publication is distributed with the support of the Foundation Terre Plurielle, the Comité d'Action Citoyenne Bouygues Bâtiment Sud Est, and the foundation ADPS-Partenaire d'Allianz.

 

                             1 Dia presentation Lucie                            2 Groupe livret lucie


First international symposium on cancer and intellectual disability, 2014

Oncodéfi organized and presented, with the help of the Canceropôle Grand Sud-Ouest, the first international symposium on cancer in people with intellectual disability, February 5-7, 2014 in Montpellier, France. The congress assembled 120 speakers and participants from eleven countries: Belgium, Canada, Finland, France, Italy, Japan, Norway, The Netherlands, the United Kingdom, Switzerland, and the USA. This gathering allowed professionals from diverse fields—biological research, genetics, epidemiology, medical oncology, psychiatry, psychology, sociology, as well as social workers, nurses, and professional care-givers—and families to meet and share their knowledge and skills.

The second international symposium is scheduled for October 10-12, 2018 in Montpellier.

                           3 Symposium 2014 1                                      4 Comité scientifique 2014

Publications

Books and book chapters:

  • 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)

  • 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

  • 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

                                                            5 Livre Satgé Merrick1 recto                              6 Livre Satgé Merrick verso

  

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

http://www.tumorijournal.com/article/adenocarcinoma-of-the-lung-in-down-syndrome--first-clinical-report

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

 

Congresses

Oral and poster presentations in national (France) and international congresses on Cancer, Intellectual disability, Down syndrome, Psycho-oncology and Genetics.

 

Formation, teaching

Oncodéfi gives teachings on cancer and intellectual disability in France in universities, hospitals and associations.

                               7 Formation autisme et cancer                                        8 Formation Adages

 

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.

                                                                          oncodefinet

To make a donation:
Indicate : ONCODEFI and send to
Maître Sophie Roussel
12 rue Jean Jaurès
34770 Gigean
Tel 04 67 78 20 62
sroussel@notaires.fr

Association ONCODEFI
Parc Euromédecine
209 avenue des Apothicaires
34090 Montpellier
09 83 54 85 13
contact@oncodefi.org