{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,14]],"date-time":"2026-10-14T22:20:18Z","timestamp":1792016418124,"version":"4.4.0"},"reference-count":45,"publisher":"Elsevier BV","license":[{"start":{"date-parts":[[2019,7,1]],"date-time":"2019-07-01T00:00:00Z","timestamp":1561939200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2019,7,1]],"date-time":"2019-07-01T00:00:00Z","timestamp":1561939200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2020,5,9]],"date-time":"2020-05-09T00:00:00Z","timestamp":1588982400000},"content-version":"am","delay-in-days":313,"URL":"http:\/\/www.elsevier.com\/open-access\/userlicense\/1.0\/"}],"content-domain":{"domain":["clinicalkey.com","clinicalkey.com.au","clinicalkey.es","clinicalkey.fr","clinicalkey.jp","epilepsybehavior.com","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Epilepsy &amp; Behavior"],"published-print":{"date-parts":[[2019,7]]},"DOI":"10.1016\/j.yebeh.2019.04.027","type":"journal-article","created":{"date-parts":[[2019,5,9]],"date-time":"2019-05-09T03:39:35Z","timestamp":1557373175000},"page":"23-27","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":48,"special_numbering":"C","title":["Experience of follow-up, quality of life, and transition from pediatric to adult healthcare of patients with tuberous sclerosis complex"],"prefix":"10.1016","volume":"96","author":[{"given":"Claire","family":"Bar","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rouba","family":"Ghobeira","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rita","family":"Azzi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Doroth\u00e9e","family":"Ville","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Audrey","family":"Riquet","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Renaud","family":"Touraine","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicole","family":"Chemaly","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rima","family":"Nabbout","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"key":"10.1016\/j.yebeh.2019.04.027_bb0005","doi-asserted-by":"crossref","first-page":"570","DOI":"10.1016\/1054-139X(93)90143-D","article-title":"Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine","volume":"14","author":"Blum","year":"1993","journal-title":"J Adolesc Health Off Publ Soc Adolesc Med"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0010","doi-asserted-by":"crossref","first-page":"1562","DOI":"10.1542\/peds.2004-1262","article-title":"Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs","volume":"115","author":"Lotstein","year":"2005","journal-title":"Pediatrics"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0015","doi-asserted-by":"crossref","first-page":"113","DOI":"10.1007\/s00467-004-1763-y","article-title":"Problems and pitfalls of transition from paediatric to adult renal care","volume":"20","author":"Watson","year":"2005","journal-title":"Pediatr Nephrol Berl Ger"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0020","doi-asserted-by":"crossref","first-page":"e197","DOI":"10.1542\/peds.113.3.e197","article-title":"Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects","volume":"113","author":"Reid","year":"2004","journal-title":"Pediatrics"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0025","doi-asserted-by":"crossref","first-page":"1481","DOI":"10.1016\/S0140-6736(07)60370-5","article-title":"Adolescents with a chronic condition: challenges living, challenges treating","volume":"369","author":"Sawyer","year":"2007","journal-title":"Lancet Lond Engl"},{"issue":"4","key":"10.1016\/j.yebeh.2019.04.027_bb0030","article-title":"Transition of care for adolescents from paediatric services to adult health services","author":"Campbell","year":"2016","journal-title":"Cochrane Database Syst Rev"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0035","doi-asserted-by":"crossref","first-page":"112","DOI":"10.1542\/peds.2004-1321","article-title":"Health care transition: youth, family, and provider perspectives","volume":"115","author":"Reiss","year":"2005","journal-title":"Pediatrics"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0040","doi-asserted-by":"crossref","first-page":"182","DOI":"10.1016\/j.yebeh.2015.07.035","article-title":"Developing from child to adult: risk factors for poor psychosocial outcome in adolescents and young adults with epilepsy","volume":"51","author":"Geerlings","year":"2015","journal-title":"Epilepsy Behav"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0045","doi-asserted-by":"crossref","first-page":"243","DOI":"10.1016\/j.pediatrneurol.2013.08.001","article-title":"Tuberous sclerosis complex diagnostic criteria update: recommendations of the 2012 international tuberous sclerosis complex consensus conference","volume":"49","author":"Northrup","year":"2013","journal-title":"Pediatr Neurol"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0050","doi-asserted-by":"crossref","first-page":"139","DOI":"10.2147\/PHMT.S67342","article-title":"Clinical management of tuberous sclerosis complex over the lifetime of a patient","volume":"6","author":"Frost","year":"2015","journal-title":"Pediatr Health Med Ther"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0055","doi-asserted-by":"crossref","first-page":"1236","DOI":"10.1111\/j.1528-1167.2009.02474.x","article-title":"The natural history of epilepsy in tuberous sclerosis complex","volume":"51","author":"Chu-Shore","year":"2010","journal-title":"Epilepsia"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0060","doi-asserted-by":"crossref","first-page":"657","DOI":"10.1016\/S0140-6736(08)61279-9","article-title":"Tuberous sclerosis","volume":"372","author":"Curatolo","year":"2008","journal-title":"Lancet Lond Engl"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0065","doi-asserted-by":"crossref","first-page":"733","DOI":"10.1016\/S1474-4422(15)00069-1","article-title":"Neurological and neuropsychiatric aspects of tuberous sclerosis complex","volume":"14","author":"Curatolo","year":"2015","journal-title":"Lancet Neurol"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0070","doi-asserted-by":"crossref","first-page":"183","DOI":"10.1007\/s00787-005-0443-1","article-title":"Consensus clinical guidelines for the assessment of cognitive and behavioural problems in tuberous sclerosis","volume":"14","author":"de Vries","year":"2005","journal-title":"Eur Child Adolesc Psychiatry"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0075","doi-asserted-by":"crossref","first-page":"666","DOI":"10.1177\/08830738040190090601","article-title":"Behavioral and cognitive aspects of tuberous sclerosis complex","volume":"19","author":"Prather","year":"2004","journal-title":"J Child Neurol"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0080","doi-asserted-by":"crossref","first-page":"255","DOI":"10.1016\/j.pediatrneurol.2013.08.002","article-title":"Tuberous sclerosis complex surveillance and management: recommendations of the 2012 international tuberous sclerosis complex consensus conference","volume":"49","author":"Krueger","year":"2013","journal-title":"Pediatr Neurol"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0085","doi-asserted-by":"crossref","first-page":"161","DOI":"10.1016\/j.yebeh.2016.11.010","article-title":"Outcome of childhood-onset epilepsy from adolescence to adulthood: transition issues","volume":"69","author":"Nabbout","year":"2017","journal-title":"Epilepsy Behav"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0090","doi-asserted-by":"crossref","first-page":"29","DOI":"10.1111\/epi.12722","article-title":"Transition into adulthood: tuberous sclerosis complex, Sturge-Weber syndrome, and Rasmussen encephalitis","volume":"55","author":"Thiele","year":"2014","journal-title":"Epilepsia"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0095","doi-asserted-by":"crossref","first-page":"711","DOI":"10.1111\/j.1440-1754.2011.02038.x","article-title":"An Australian tuberous sclerosis cohort: are surveillance guidelines being met?","volume":"47","author":"Chopra","year":"2011","journal-title":"J Paediatr Child Health"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0100","doi-asserted-by":"crossref","first-page":"355","DOI":"10.1002\/ajmg.c.31653","article-title":"Healthcare transition from childhood to adulthood in tuberous sclerosis complex","volume":"178","author":"Peron","year":"2018","journal-title":"Am J Med Genet C Semin Med Genet"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0105","doi-asserted-by":"crossref","DOI":"10.1186\/s12882-018-0835-3","article-title":"Renal manifestations of tuberous sclerosis complex: patients' and parents' knowledge and routines for renal follow-up - a questionnaire study","volume":"19","author":"Cockerell","year":"2018","journal-title":"BMC Nephrol"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0110","doi-asserted-by":"crossref","first-page":"13","DOI":"10.1016\/j.yebeh.2018.03.012","article-title":"Tuberous sclerosis complex: concerns and needs of patients and parents from the transitional period to adulthood","volume":"83","author":"Both","year":"2018","journal-title":"Epilepsy Behav"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0115","doi-asserted-by":"crossref","first-page":"170","DOI":"10.1016\/j.yebeh.2016.11.009","article-title":"The transition from pediatric to adult care for youth with epilepsy: basic biological, sociological, and psychological issues","volume":"69","author":"Camfield","year":"2017","journal-title":"Epilepsy Behav"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0120","doi-asserted-by":"crossref","first-page":"161","DOI":"10.1016\/j.yebeh.2013.07.015","article-title":"Transition and transfer from pediatric to adult health care in epilepsy: a families' survey on Dravet syndrome","volume":"29","author":"Kuchenbuch","year":"2013","journal-title":"Epilepsy Behav"},{"issue":"Suppl. 5","key":"10.1016\/j.yebeh.2019.04.027_bb0125","doi-asserted-by":"crossref","first-page":"21","DOI":"10.1111\/j.1528-1167.2011.03179.x","article-title":"Strategies for transitioning to adult care for youth with Lennox-Gastaut syndrome and related disorders","volume":"52","author":"Camfield","year":"2011","journal-title":"Epilepsia"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0130","first-page":"77","article-title":"Epilepsy: addressing the transition from pediatric to adult care","volume":"7","author":"Rajendran","year":"2016","journal-title":"Adolesc Health Med Ther"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0135","doi-asserted-by":"crossref","first-page":"435","DOI":"10.1016\/j.pediatrneurol.2014.11.013","article-title":"Tuberous sclerosis complex: a survey of health care resource use and health burden","volume":"52","author":"Rentz","year":"2015","journal-title":"Pediatr Neurol"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0140","doi-asserted-by":"crossref","first-page":"64","DOI":"10.1016\/j.yebeh.2018.03.006","article-title":"Characteristics and healthcare situation of adult patients with tuberous sclerosis complex in German epilepsy centers","volume":"82","author":"Hamer","year":"2018","journal-title":"Epilepsy Behav"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0145","doi-asserted-by":"crossref","first-page":"60","DOI":"10.1186\/1477-7525-1-60","article-title":"The Quality of Life Scale (QOLS): reliability, validity, and utilization","volume":"1","author":"Burckhardt","year":"2003","journal-title":"Health Qual Life Outcomes"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0150","first-page":"58","article-title":"Validation of the French \u201cmultidimensional fatigue inventory\u201d (MFI 20)","volume":"12","author":"Gentile","year":"2003","journal-title":"Eur J Cancer Care (Engl)"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0155","doi-asserted-by":"crossref","first-page":"335","DOI":"10.1017\/S0033291702007092","article-title":"Learning disability and epilepsy in an epidemiological sample of individuals with tuberous sclerosis complex","volume":"33","author":"Joinson","year":"2003","journal-title":"Psychol Med"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0160","doi-asserted-by":"crossref","first-page":"558","DOI":"10.1016\/j.seizure.2006.06.010","article-title":"Mental retardation and relation to seizure and tuber burden in tuberous sclerosis complex","volume":"15","author":"Zaroff","year":"2006","journal-title":"Seizure"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0165","doi-asserted-by":"crossref","first-page":"792","DOI":"10.1016\/S0025-6196(12)61196-3","article-title":"Causes of death in patients with tuberous sclerosis","volume":"66","author":"Shepherd","year":"1991","journal-title":"Mayo Clin Proc"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0170","doi-asserted-by":"crossref","first-page":"279","DOI":"10.1016\/j.ijpharm.2016.05.064","article-title":"Formulation and characterization of a 0.1% rapamycin cream for the treatment of tuberous sclerosis complex-related angiofibromas","volume":"509","author":"Bougu\u00e9on","year":"2016","journal-title":"Int J Pharm"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0175","doi-asserted-by":"crossref","first-page":"773","DOI":"10.1001\/jamadermatol.2018.0464","article-title":"Efficacy and safety of topical rapamycin in patients with facial angiofibromas secondary to tuberous sclerosis complex: the TREATMENT randomized clinical trial","volume":"154","author":"Koenig","year":"2018","journal-title":"JAMA Dermatol"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0180","doi-asserted-by":"crossref","first-page":"781","DOI":"10.1001\/jamadermatol.2018.1408","article-title":"Sirolimus gel treatment vs placebo for facial angiofibromas in patients with tuberous sclerosis complex","volume":"154","author":"Wataya-Kaneda","year":"2018","journal-title":"JAMA Dermatol"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0185","doi-asserted-by":"crossref","first-page":"25","DOI":"10.1016\/j.pediatrneurol.2014.10.004","article-title":"Tuberous sclerosis associated neuropsychiatric disorders (TAND) and the TAND checklist","volume":"52","author":"de Vries","year":"2015","journal-title":"Pediatr Neurol"},{"issue":"Suppl. 3","key":"10.1016\/j.yebeh.2019.04.027_bb0190","doi-asserted-by":"crossref","first-page":"52","DOI":"10.1111\/epi.12598","article-title":"Bringing the transition of epilepsy care from children to adults out of the shadows","volume":"55","author":"Nabbout","year":"2014","journal-title":"Epilepsia"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0195","doi-asserted-by":"crossref","first-page":"17","DOI":"10.1016\/j.pediatrneurol.2014.02.020","article-title":"What happens to children with epilepsy when they become adults? Some facts and opinions","volume":"51","author":"Camfield","year":"2014","journal-title":"Pediatr Neurol"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0200","doi-asserted-by":"crossref","first-page":"414","DOI":"10.1016\/j.seizure.2013.04.008","article-title":"Help youth with epilepsy to become competent and happy adults: transition care","volume":"22","author":"Camfield","year":"2013","journal-title":"Seizure"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0205","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2013-003707","article-title":"Assisting a child with tuberous sclerosis complex (TSC): a qualitative deep analysis of parents' experience and caring needs","volume":"3","author":"Graffigna","year":"2013","journal-title":"BMJ Open"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0210","doi-asserted-by":"crossref","first-page":"505","DOI":"10.1016\/j.yebeh.2008.05.010","article-title":"Behavior problems in children with tuberous sclerosis complex and parental stress","volume":"13","author":"Kopp","year":"2008","journal-title":"Epilepsy Behav"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0215","doi-asserted-by":"crossref","first-page":"16","DOI":"10.1007\/s00787-006-0570-3","article-title":"The psychopathologies of children and adolescents with tuberous sclerosis complex (TSC): a postal survey of UK families","volume":"16","author":"de Vries","year":"2007","journal-title":"Eur Child Adolesc Psychiatry"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0220","doi-asserted-by":"crossref","first-page":"256","DOI":"10.1111\/j.1469-8749.2002.tb00801.x","article-title":"Care of adolescents with severe learning disability from tuberous sclerosis","volume":"44","author":"Ferguson","year":"2002","journal-title":"Dev Med Child Neurol"},{"key":"10.1016\/j.yebeh.2019.04.027_bb0225","doi-asserted-by":"crossref","first-page":"182","DOI":"10.1542\/peds.2011-0969","article-title":"Supporting the health care transition from adolescence to adulthood in the medical home","volume":"128","author":"American Academy of Pediatrics","year":"2011","journal-title":"Pediatrics"}],"container-title":["Epilepsy &amp; Behavior"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1525505018308291?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1525505018308291?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,10,26]],"date-time":"2025-10-26T18:26:58Z","timestamp":1761503218000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S1525505018308291"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,7]]},"references-count":45,"alternative-id":["S1525505018308291"],"URL":"https:\/\/doi.org\/10.1016\/j.yebeh.2019.04.027","relation":{},"ISSN":["1525-5050"],"issn-type":[{"value":"1525-5050","type":"print"}],"subject":[],"published":{"date-parts":[[2019,7]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Experience of follow-up, quality of life, and transition from pediatric to adult healthcare of patients with tuberous sclerosis complex","name":"articletitle","label":"Article Title"},{"value":"Epilepsy & Behavior","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.yebeh.2019.04.027","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2019 Published by Elsevier Inc.","name":"copyright","label":"Copyright"}]}}