{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,5]],"date-time":"2026-10-05T15:26:22Z","timestamp":1791213982825,"version":"4.1.0"},"reference-count":62,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2018,4,21]],"date-time":"2018-04-21T00:00:00Z","timestamp":1524268800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["American J of Med Genetics Pt A"],"published-print":{"date-parts":[[2018,5]]},"abstract":"<jats:p>Neurofibromatosis type 1 (NF1) is a neurocutaneous disorder associated with lifelong tumor growth propensity and neurocognitive impairments. Although follow\u2010up of adults with NF1 often focuses on tumor growth, follow\u2010up of cognitive or social problems and other NF1\u2010related comorbidity is often not a part of standardized care. In order to provide optimal care services for these patients, we explored the care needs of adults with NF1. A qualitative study was performed using semi\u2010structured group interviews, exploring worries and care needs in medical, psychological, and socioeconomic domains, also focusing on the transition from pediatric to adult care. Four focus groups were conducted, including young adult patients, patients over age 30, and parents of young adult patients. In total, 30 patients and 12 parents participated. Data were transcribed verbatim and analyzed by computerized thematic analysis. Themes were organized using the World Health Organization International classification of functioning, disability, and health (ICF). Results indicated many and diverse worries and care needs both during the transitional period and in adulthood in medical, mental health, and socioeconomic domains. Worries could be categorized into 13 themes. Parents reported high stress levels and difficulties with their parental role. Participants expressed the need for more information, access to NF1 experts, daily living support, care for mental health and socioeconomic participation, and closer communication between health\u2010care providers. In conclusion, worries and needs of patients and parents underline the importance of multidisciplinary follow\u2010up and continuity of care during and after the transitional period. Additionally, parental stress requires more attention from care providers.<\/jats:p>","DOI":"10.1002\/ajmg.a.38680","type":"journal-article","created":{"date-parts":[[2018,4,22]],"date-time":"2018-04-22T04:10:11Z","timestamp":1524370211000},"page":"1150-1160","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":66,"title":["Worries and needs of adults and parents of adults with neurofibromatosis type 1"],"prefix":"10.1002","volume":"176","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9004-0836","authenticated-orcid":false,"given":"Andre B.","family":"Rietman","sequence":"first","affiliation":[{"name":"ENCORE Expertise Center for Neurodevelopmental Disorders Erasmus Medical Center Rotterdam The Netherlands"},{"name":"Department of Child and Adolescent Psychiatry\/Psychology Erasmus Medical Center\u2010Sophia Children's Hospital Rotterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hanneke","family":"van Helden","sequence":"additional","affiliation":[{"name":"ENCORE Expertise Center for Neurodevelopmental Disorders Erasmus Medical Center Rotterdam The Netherlands"},{"name":"Intellectual Disability Medicine, Department of General Practice Erasmus Medical Center Rotterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Pauline H.","family":"Both","sequence":"additional","affiliation":[{"name":"ENCORE Expertise Center for Neurodevelopmental Disorders Erasmus Medical Center Rotterdam The Netherlands"},{"name":"Intellectual Disability Medicine, Department of General Practice Erasmus Medical Center Rotterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Walter","family":"Taal","sequence":"additional","affiliation":[{"name":"ENCORE Expertise Center for Neurodevelopmental Disorders Erasmus Medical Center Rotterdam The Netherlands"},{"name":"Department of Neuro\u2010Oncology\/Neurology Erasmus Medical Center\u2010Cancer Institute Rotterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jeroen S.","family":"Legerstee","sequence":"additional","affiliation":[{"name":"ENCORE Expertise Center for Neurodevelopmental Disorders Erasmus Medical Center Rotterdam The Netherlands"},{"name":"Department of Child and Adolescent Psychiatry\/Psychology Erasmus Medical Center\u2010Sophia Children's Hospital Rotterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"AnneLoes","family":"van Staa","sequence":"additional","affiliation":[{"name":"Research Center Innovations in Care Rotterdam University of Applied Sciences Rotterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Henriette A.","family":"Moll","sequence":"additional","affiliation":[{"name":"ENCORE Expertise Center for Neurodevelopmental Disorders Erasmus Medical Center Rotterdam The Netherlands"},{"name":"Department of General Pediatrics Erasmus Medical Center\u2010Sophia Children's Hospital Rotterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rianne","family":"Oostenbrink","sequence":"additional","affiliation":[{"name":"ENCORE Expertise Center for Neurodevelopmental Disorders Erasmus Medical Center Rotterdam The Netherlands"},{"name":"Department of General Pediatrics Erasmus Medical Center\u2010Sophia Children's Hospital Rotterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Agnies M.","family":"van Eeghen","sequence":"additional","affiliation":[{"name":"ENCORE Expertise Center for Neurodevelopmental Disorders Erasmus Medical Center Rotterdam The Netherlands"},{"name":"Intellectual Disability Medicine, Department of General Practice Erasmus Medical Center Rotterdam The Netherlands"},{"name":"Department of General Pediatrics Erasmus Medical Center\u2010Sophia Children's Hospital Rotterdam The Netherlands"},{"name":"De Hartekamp Groep Care and Service Center for People with Intellectual Disabilities Haarlem The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2018,4,21]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.37186"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.1002\/ijc.1372"},{"key":"e_1_2_12_4_1","unstructured":"ATLAS.ti. (2011).ATLAS.ti 6. GmbH SSD: Berlin."},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12687-015-0247-z"},{"key":"e_1_2_12_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/jan.12319"},{"key":"e_1_2_12_7_1","doi-asserted-by":"publisher","DOI":"10.1017\/S0012162204000921"},{"key":"e_1_2_12_8_1","doi-asserted-by":"publisher","DOI":"10.1352\/1934-9556-51.3.176"},{"key":"e_1_2_12_9_1","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_2_12_10_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2008.00850.x"},{"key":"e_1_2_12_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/cge.12551"},{"key":"e_1_2_12_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2015.04.075"},{"key":"e_1_2_12_13_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-015-9829-5"},{"key":"e_1_2_12_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pediatrneurol.2014.10.004"},{"key":"e_1_2_12_15_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2788.2012.01648.x"},{"key":"e_1_2_12_16_1","doi-asserted-by":"publisher","DOI":"10.1111\/jspn.12174"},{"key":"e_1_2_12_17_1","doi-asserted-by":"publisher","DOI":"10.1111\/apa.12946"},{"key":"e_1_2_12_18_1","first-page":"141","article-title":"Pediatric neurofibromatosis 1 and parental stress: A multicenter study","volume":"10","author":"Esposito M.","year":"2014","journal-title":"Neuropsychiatric Disease and Treatment"},{"key":"e_1_2_12_19_1","unstructured":"European\u2010Commission. (2007).Inclusion strategy of the \u201cyouth in action\u201d programme (2007\u20132013). Retrieved fromhttps:\/\/www.salto-youth.net\/downloads\/4-17-1294\/InclusionStrategyYiA.pdf"},{"key":"e_1_2_12_20_1","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.39.5.311"},{"key":"e_1_2_12_21_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.33139"},{"key":"e_1_2_12_22_1","doi-asserted-by":"publisher","DOI":"10.1136\/archdischild-2015-309473"},{"key":"e_1_2_12_23_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijnurstu.2013.02.001"},{"key":"e_1_2_12_24_1","doi-asserted-by":"publisher","DOI":"10.1016\/B978-0-444-52902-2.00053-9"},{"key":"e_1_2_12_25_1","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.2006.045906"},{"key":"e_1_2_12_26_1","doi-asserted-by":"publisher","DOI":"10.1002\/(SICI)1096-8628(19990326)89:1<1::AID-AJMG3>3.0.CO;2-8"},{"key":"e_1_2_12_27_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.2010.03624.x"},{"key":"e_1_2_12_28_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1741-3729.2011.00693.x"},{"key":"e_1_2_12_29_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-012-9527-5"},{"key":"e_1_2_12_30_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.2006.tb01268.x"},{"key":"e_1_2_12_31_1","doi-asserted-by":"publisher","DOI":"10.1212\/01.wnl.0000179303.72345.ce"},{"key":"e_1_2_12_32_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.2005.tb01128.x"},{"key":"e_1_2_12_33_1","unstructured":"Korf B. R.(2015). Neurofibromatosis type 1 (NF1): Management and prognosis. Retrieved fromhttps:\/\/www.uptodate.com\/contents\/neurofibromatosis-type-1-nf1-management-and-prognosis"},{"key":"e_1_2_12_34_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.37987"},{"key":"e_1_2_12_35_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.2012.04399.x"},{"key":"e_1_2_12_36_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.35915"},{"key":"e_1_2_12_37_1","doi-asserted-by":"publisher","DOI":"10.1207\/S15324796ABM2304_9"},{"key":"e_1_2_12_38_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2008-1298"},{"key":"e_1_2_12_39_1","doi-asserted-by":"publisher","DOI":"10.1177\/1087054712450749"},{"key":"e_1_2_12_40_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamapsychiatry.2016.2600"},{"key":"e_1_2_12_41_1","unstructured":"NICE. (2016).Transition from children's to adults' services. National Institute for Health and Care Excellence. Retrieved fromhttps:\/\/www.nice.org.uk\/guidance\/ng43"},{"issue":"12","key":"e_1_2_12_42_1","first-page":"1","article-title":"Neurofibromatosis","volume":"6","author":"NIH","year":"1987","journal-title":"NIH Consens Statement 1987 Jul 13\u201315"},{"key":"e_1_2_12_43_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.35840"},{"key":"e_1_2_12_44_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.b.32095"},{"key":"e_1_2_12_45_1","doi-asserted-by":"publisher","DOI":"10.1177\/1362361315583191"},{"key":"e_1_2_12_46_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ridd.2013.07.011"},{"key":"e_1_2_12_47_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.36793"},{"key":"e_1_2_12_48_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2004-1321"},{"key":"e_1_2_12_49_1","volume-title":"Neurofibromatosis: Phenotype, natural history, and pathogenesis","author":"Riccardi V. M.","year":"1992"},{"key":"e_1_2_12_50_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2014-3934"},{"key":"e_1_2_12_51_1","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzm042"},{"key":"e_1_2_12_52_1","unstructured":"UNESCO Institute for Statistics. (2012).International standard classification of education ISCED 2011. Montreal Quebec: Author."},{"key":"e_1_2_12_53_1","doi-asserted-by":"publisher","DOI":"10.1007\/978-3-642-32864-0"},{"key":"e_1_2_12_54_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(13)70227-8"},{"key":"e_1_2_12_55_1","doi-asserted-by":"publisher","DOI":"10.1111\/dmcn.12044"},{"key":"e_1_2_12_56_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.35982"},{"key":"e_1_2_12_57_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jadohealth.2010.07.009"},{"key":"e_1_2_12_58_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11060-013-1195-2"},{"key":"e_1_2_12_59_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11060-015-1725-1"},{"key":"e_1_2_12_60_1","doi-asserted-by":"publisher","DOI":"10.1001\/archderm.137.11.1421"},{"key":"e_1_2_12_61_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.37123"},{"key":"e_1_2_12_62_1","unstructured":"World Health Organization(WHO). (2001).International classification of functioning disability and health (ICF). Retrieved fromhttp:\/\/www.who.int\/classifications\/icf\/en\/"},{"key":"e_1_2_12_63_1","unstructured":"World Health Organization(WHO). (2016).Mental health: Strengthening our response. Retrieved fromhttp:\/\/www.who.int\/mediacentre\/factsheets\/fs220\/en\/"}],"container-title":["American Journal of Medical Genetics Part A"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1002%2Fajmg.a.38680","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ajmg.a.38680","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/ajmg.a.38680","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ajmg.a.38680","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,5]],"date-time":"2023-09-05T05:40:11Z","timestamp":1693892411000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/ajmg.a.38680"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2018,4,21]]},"references-count":62,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2018,5]]}},"alternative-id":["10.1002\/ajmg.a.38680"],"URL":"https:\/\/doi.org\/10.1002\/ajmg.a.38680","archive":["Portico"],"relation":{},"ISSN":["1552-4825","1552-4833"],"issn-type":[{"value":"1552-4825","type":"print"},{"value":"1552-4833","type":"electronic"}],"subject":[],"published":{"date-parts":[[2018,4,21]]},"assertion":[{"value":"2017-03-14","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2018-02-22","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2018-04-21","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}