{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,20]],"date-time":"2026-01-20T12:09:15Z","timestamp":1768910955025,"version":"3.49.0"},"reference-count":29,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2015,3,21]],"date-time":"2015-03-21T00:00:00Z","timestamp":1426896000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"name":"NF Danmark: The neurofibromatosis type 1 patient association, Denmark."}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Acta Paediatrica"],"published-print":{"date-parts":[[2015,6]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Aim<\/jats:title><jats:p>Our clinical observations raised concern that teenagers and young people with neurofibromatosis type 1 (<jats:styled-content style=\"fixed-case\">NF<\/jats:styled-content>1) might feel lonely and we decided to investigate their experiences and compare them with unaffected siblings. We also assessed predictive factors of loneliness.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>We evaluated 60 <jats:styled-content style=\"fixed-case\">NF<\/jats:styled-content>1 patients aged 17 (\u00b13.1)\u00a0years and 23 siblings aged 17 (\u00b12.9) years with a self\u2010report questionnaire that assessed loneliness, depression, shyness, self\u2010esteem, social support, bullying and difficulties making friends. Objective assessments of <jats:styled-content style=\"fixed-case\">NF<\/jats:styled-content>1 disease severity and visibility and somatic <jats:styled-content style=\"fixed-case\">NF<\/jats:styled-content>1\u2010related and social support\u2010related variables were carried out. Multiple linear regression analysis was performed.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Of the 60 patients with <jats:styled-content style=\"fixed-case\">NF<\/jats:styled-content>1, 11 (18%; <jats:styled-content style=\"fixed-case\">CI<\/jats:styled-content>: 8\u201328%) said that they felt lonely often or always and felt a higher degree of loneliness, but none of the siblings said that they felt lonely. Predictors of loneliness were depression, shyness, bullying, self\u2010perceived conception of illness burden and a low level of social support from friends.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Teenagers and young adults with <jats:styled-content style=\"fixed-case\">NF<\/jats:styled-content>1 experienced a higher prevalence and higher degree of loneliness than siblings of <jats:styled-content style=\"fixed-case\">NF<\/jats:styled-content>1 patients. As loneliness affects social, affective and cognitive functions, increased attention on loneliness and the predictive factors described in this study are required.<\/jats:p><\/jats:sec>","DOI":"10.1111\/apa.12946","type":"journal-article","created":{"date-parts":[[2015,1,27]],"date-time":"2015-01-27T09:21:10Z","timestamp":1422350470000},"page":"604-609","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":20,"title":["Teenagers and young adults with neurofibromatosis type 1 are more likely to experience loneliness than siblings without the illness"],"prefix":"10.1111","volume":"104","author":[{"given":"Cecilie","family":"Ejerskov","sequence":"first","affiliation":[{"name":"Department of Paediatrics A Centre for Rare Diseases Aarhus University Hospital Aarhus N Denmark"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mathias","family":"Lasgaard","sequence":"additional","affiliation":[{"name":"Public Health and 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