{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,9,16]],"date-time":"2025-09-16T19:17:29Z","timestamp":1758050249350,"version":"3.44.0"},"reference-count":39,"publisher":"Elsevier BV","issue":"9","license":[{"start":{"date-parts":[[2021,9,1]],"date-time":"2021-09-01T00:00:00Z","timestamp":1630454400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2021,9,1]],"date-time":"2021-09-01T00:00:00Z","timestamp":1630454400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2022,9,14]],"date-time":"2022-09-14T00:00:00Z","timestamp":1663113600000},"content-version":"am","delay-in-days":378,"URL":"http:\/\/www.elsevier.com\/open-access\/userlicense\/1.0\/"}],"content-domain":{"domain":["clinicalkey.fr","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Bulletin du Cancer"],"published-print":{"date-parts":[[2021,9]]},"DOI":"10.1016\/j.bulcan.2021.07.001","type":"journal-article","created":{"date-parts":[[2021,7,30]],"date-time":"2021-07-30T07:41:09Z","timestamp":1627630869000},"page":"827-836","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":0,"title":["Cancer chez un enfant porteur de handicap intellectuel\u00a0: questionnement et enjeux \u00e9thiques"],"prefix":"10.1016","volume":"108","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2275-5653","authenticated-orcid":false,"given":"Anne","family":"Auvrignon","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Gu\u00e9nola","family":"Vialle","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5876-0219","authenticated-orcid":false,"given":"Delphine","family":"G\u00e9rard","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Claire","family":"Pommier de Santi","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Franck","family":"Bourdeaut","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0065-2271","authenticated-orcid":false,"given":"Dominique","family":"Davous","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"78","reference":[{"year":"2013","series-title":"Synth\u00e8se du rapport sur l\u2019acc\u00e8s aux soins et \u00e0 la sant\u00e9 des personnes handicap\u00e9es","author":"Jacob","key":"10.1016\/j.bulcan.2021.07.001_bib0200"},{"year":"2017","series-title":"Rapport de la HAS\u00a0: Accueil, accompagnement et organisation des soins en \u00e9tablissement de sant\u00e9 pour les personnes en situation de handicap","key":"10.1016\/j.bulcan.2021.07.001_bib0205"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0210","doi-asserted-by":"crossref","first-page":"255","DOI":"10.3917\/spub.192.0255","article-title":"G\u00e9ographie de la population des enfants en situation de handicap en France m\u00e9tropolitaine","volume":"31","author":"Etchegaray","year":"2019","journal-title":"Sante Publique"},{"year":"2016","series-title":"D\u00e9ficiences intellectuelles, une expertise collective de l\u2019INSERM","author":"Des Portes","key":"10.1016\/j.bulcan.2021.07.001_bib0215"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0220","first-page":"1263","article-title":"Aspects \u00e9pid\u00e9miologiques des cancers de l\u2019enfant","volume":"64","author":"Lacour","year":"2014","journal-title":"Rev Prat"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0225","doi-asserted-by":"crossref","first-page":"165","DOI":"10.1016\/S0140-6736(99)05264-2","article-title":"Risks of leukaemia and solid tumours in individuals with Down's syndrome","volume":"355","author":"Hasle","year":"2000","journal-title":"Lancet"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0230","doi-asserted-by":"crossref","first-page":"591","DOI":"10.1111\/bjh.14085","article-title":"Supportive care utilization and treatment toxicity in children with Down syndrome and acute leukemia at free-standing paediatric hospitals in the United States","volume":"174","author":"Salazar","year":"2016","journal-title":"Haematol"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0235","doi-asserted-by":"crossref","first-page":"983","DOI":"10.1111\/bjh.13817","article-title":"Impact of therapy in a cohort of unselected children with Down syndrome-associated acute lymphoblastic leukemia","volume":"174","author":"Derouet","year":"2016","journal-title":"Br J Haematol"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0240","doi-asserted-by":"crossref","first-page":"927","DOI":"10.1002\/pbc.22515","article-title":"Myeloid leukemia in children with Down syndrome: report of the registry-based French experience between 1990 and 2003","volume":"54","author":"Tandonnet","year":"2010","journal-title":"Pediatr Blood Cancer"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0245","doi-asserted-by":"crossref","first-page":"3314","DOI":"10.1182\/blood-2017-01-765057","article-title":"Therapy reduction in patients with Down syndrome and myeloid leukemia: the international ML-DS 2006 Trial","volume":"129","author":"Uffman","year":"2017","journal-title":"Blood"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0250","doi-asserted-by":"crossref","first-page":"645","DOI":"10.3324\/haematol.2017.176123","article-title":"Prevalence and characteristics of metabolic syndrome in adults from the French childhood leukemia survivors\u2019 cohort: a comparison with controls from the French population","volume":"103","author":"Oudin","year":"2018","journal-title":"Haematologica"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0255","doi-asserted-by":"crossref","first-page":"5262","DOI":"10.1200\/JCO.2007.12.3802","article-title":"Disability in adult survivors of childhood cancer: a Swedish national cohort study","volume":"25","author":"Hjern","year":"2007","journal-title":"J Clin Oncol"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0260","doi-asserted-by":"crossref","first-page":"89","DOI":"10.1080\/0880010390158595","article-title":"Long-term sequelae in children treated for brain tumors: impairments, disability, and handicap","volume":"20","author":"Macedoni-Luksic","year":"2003","journal-title":"Pediatr Hematol Oncol"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0265","first-page":"15","article-title":"Health related quality of life and psychological outcome in patients treated for craniopharyngioma in childhood","volume":"19","author":"Pedreira","year":"2006","journal-title":"J Pediatr Endocinol Metab"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0270","doi-asserted-by":"crossref","first-page":"899","DOI":"10.1016\/j.arcped.2015.05.016","article-title":"Silence would be the greatest error","volume":"22","author":"Auvrignon","year":"2015","journal-title":"Arch Pediatr"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0275","doi-asserted-by":"crossref","first-page":"7","DOI":"10.1111\/j.1468-3156.2006.00421.x","article-title":"This is my story: I\u2019ve got cancer: \u2018The Veronica Project\u2019: an ethnographic study of the experiences of people with learning disabilities who have cancer","volume":"35","author":"Tuffrey-Wijne","year":"2007","journal-title":"Br J Learn Disabil"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0280","doi-asserted-by":"crossref","first-page":"282","DOI":"10.1111\/bld.12072","article-title":"Jo's Story: the journey of one woman's experience of having cancer and a \u2018learning disability\u2019","volume":"42","author":"Martean","year":"2014","journal-title":"Br J Learn Disabil"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0285","first-page":"A6","article-title":"D\u00e9ficience intellectuelle et cancer chez l\u2019enfant\u00a0: processus d\u00e9cisionnel th\u00e9rapeutique du point de vue du m\u00e9decin r\u00e9f\u00e9rent, enqu\u00eate clinique et analyse \u00e9thique","volume":"2","author":"Dangles","year":"2019","journal-title":"Arch Pediat Perfectionnement en Pediatr"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0290","series-title":"Bulletin du CREAI Bourgogne","first-page":"5","article-title":"Les cancers chez les enfants et adultes porteurs d\u2019une d\u00e9ficience intellectuelle","volume":"336","author":"Azema","year":"2013"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0295","doi-asserted-by":"crossref","first-page":"456","DOI":"10.1111\/j.1466-7657.2009.00735.x","article-title":"Attitudes of nurse professionals and nursing students towards children with disabilities. Do nurses really overcome children's physical and mental handicaps?","volume":"56","author":"Matziou","year":"2009","journal-title":"Int Nurs Rev"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0300","doi-asserted-by":"crossref","first-page":"1198","DOI":"10.1002\/pon.4211","article-title":"\u201cYou don\u2019t know what's wrong with you\u201d: an exploration of cancer-related experiences in people with an intellectual disability","volume":"25","author":"Flynn","year":"2016","journal-title":"Psychooncology"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0305","series-title":"Trait\u00e9 de bio\u00e9thique Tome I\u00a0\u2013\u00a0Fondements, principes et rep\u00e8res","first-page":"173","article-title":"Les figures de la vuln\u00e9rabilit\u00e9","author":"B\u00e9tr\u00e9mieux","year":"2010"},{"year":"2007","series-title":"Petit trait\u00e9 de la d\u00e9cision m\u00e9dicale","author":"Le Coz","key":"10.1016\/j.bulcan.2021.07.001_bib0310"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0315","first-page":"300","article-title":"What knowledge and attitudes do paid carers of people with a learning disability have about cancer?","volume":"22","author":"Wyatt","year":"2013","journal-title":"Eur J Cancer Care"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0320","doi-asserted-by":"crossref","first-page":"135","DOI":"10.1016\/j.clon.2006.10.006","article-title":"Challenges in treating patients with Down's syndrome and testicular cancer with chemotherapy and radiotherapy: the Royal Marsden Experience","volume":"19","author":"Hafeez","year":"2007","journal-title":"Clin Oncol"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0325","doi-asserted-by":"crossref","first-page":"1353","DOI":"10.1007\/s00431-020-03607-6","article-title":"Cancer treatment in disabled children","author":"Meazza","year":"2020","journal-title":"Eur J Pediatr"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0330","doi-asserted-by":"crossref","first-page":"357","DOI":"10.1016\/j.ejon.2006.12.005","article-title":"Supporting people with intellectual disability in the cancer journey: the \u2018living with cancer\u2019 communication pack","volume":"11","author":"Gilber","year":"2007","journal-title":"Eur J Oncol Nurs"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0335","doi-asserted-by":"crossref","first-page":"12","DOI":"10.1111\/j.1468-3156.2006.00400.x","article-title":"Meeting the cancer information needs of people with learning disabilities: experiences of paid carers","volume":"35","author":"Jones","year":"2007","journal-title":"Br J Learn Disabil"},{"year":"2015","series-title":"Lucie est soign\u00e9e pour un cancer","key":"10.1016\/j.bulcan.2021.07.001_bib0340"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0345","doi-asserted-by":"crossref","first-page":"250","DOI":"10.1111\/j.1365-2214.2008.00931.x","article-title":"Parent views on enhancing the quality of health care for their children with fragile X syndrome, autism or Down syndrome","volume":"35","author":"Minnes","year":"2009","journal-title":"Child Care Health Dev"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0350","doi-asserted-by":"crossref","first-page":"568","DOI":"10.1016\/j.ejon.2015.03.002","article-title":"Caring for cancer patients with an intellectual disability: attitudes and care perceptions of UK oncology nurses","volume":"19","author":"Flynn","year":"2015","journal-title":"Eur J Oncol Nurs"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0355","doi-asserted-by":"crossref","first-page":"257","DOI":"10.1007\/s10730-017-9326-3","article-title":"Respecting the dignity of children with disabilities in clinical practice","volume":"29","author":"Cureton","year":"2017","journal-title":"HEC Forum"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0360","doi-asserted-by":"crossref","first-page":"57","DOI":"10.1037\/0278-6133.24.4.S57","article-title":"Misimagining the unimaginable: the disability paradox and health care decision making","volume":"24","author":"Ubel","year":"2005","journal-title":"Heal Psychol"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0365","doi-asserted-by":"crossref","first-page":"199","DOI":"10.1111\/j.1469-8749.2008.02031.x","article-title":"The relationship between quality of life and functioning for children with cerebral palsy","volume":"50","author":"Shelly","year":"2008","journal-title":"Dev Med Child Neurol"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0370","first-page":"1","article-title":"Comparison of attitudes toward disability and people with disability among caregivers, the public, and people with disability: findings from a cross-sectional survey","volume":"16","author":"Qiaolan","year":"2016","journal-title":"BMC Public Health"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0375","doi-asserted-by":"crossref","first-page":"977","DOI":"10.1016\/S0277-9536(98)00411-0","article-title":"The Disability Paradox: highly qualified of life against all odds","volume":"48","author":"Albrecht","year":"1999","journal-title":"Soc Sci Med"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0380","series-title":"Le discours de bio\u00e9thique","first-page":"106","article-title":"\u00ab\u00a0Quatre principes \u00e9thiques\u00a0\u00bb","author":"Kemp","year":"2004"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0385","first-page":"7","article-title":"Le soin est un humanisme","volume":"6","author":"Fleury","year":"2019","journal-title":"Tracts Gallimard"},{"key":"10.1016\/j.bulcan.2021.07.001_bib0195","doi-asserted-by":"crossref","first-page":"191","DOI":"10.1007\/s10730-017-9330-7","article-title":"Introduction: childhood and disability","volume":"29","author":"Salter","year":"2017","journal-title":"HEC Forum"}],"container-title":["Bulletin du Cancer"],"original-title":[],"language":"fr","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0007455121002733?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0007455121002733?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,9,13]],"date-time":"2025-09-13T19:34:10Z","timestamp":1757792050000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S0007455121002733"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,9]]},"references-count":39,"journal-issue":{"issue":"9","published-print":{"date-parts":[[2021,9]]}},"alternative-id":["S0007455121002733"],"URL":"https:\/\/doi.org\/10.1016\/j.bulcan.2021.07.001","relation":{},"ISSN":["0007-4551"],"issn-type":[{"type":"print","value":"0007-4551"}],"subject":[],"published":{"date-parts":[[2021,9]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Cancer chez un enfant porteur de handicap intellectuel\u00a0: questionnement et enjeux \u00e9thiques","name":"articletitle","label":"Article Title"},{"value":"Bulletin du Cancer","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.bulcan.2021.07.001","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2021 Soci\u00e9t\u00e9 Fran\u00e7aise du Cancer. Published by Elsevier Masson SAS. All rights reserved.","name":"copyright","label":"Copyright"}]}}