{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,12,22]],"date-time":"2025-12-22T22:06:28Z","timestamp":1766441188563,"version":"build-2065373602"},"reference-count":15,"publisher":"BMJ","issue":"5","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J Med Genet"],"published-print":{"date-parts":[[1998,5]]},"abstract":"<jats:p>We conducted a pilot study to evaluate the psychological effects and consequences of Marfan syndrome in 17 patients between 16 and 35 years of age. Through a semi-structured interview, we investigated how the patients coped daily with Marfan syndrome and evaluated the impact of the disease on specific items such as schooling, occupational choices, self-image, and social behaviour. A second part of the study consisted of a battery of standardised psychological tests to evaluate the patients' anxiety and depression levels and coping styles. The following psychological tests were used: State and Trait Anxiety Inventory (STAI), Beck Depression Inventory (BDI), and the Utrecht Coping List (UCL). The interviews showed that the disease represented a significant burden on the daily physical activities of the patients, as well as on their schooling and job opportunities. During childhood, most of them were insensitively teased by peers because of their typical phenotypic features. This had its consequences on their social behaviour in that they are all more introvert. In the female patients, the risk associated with child bearing represented a major concern. Most patients emphasised the need for accurate information about the illness immediately after knowing the diagnosis and all found psychological support helpful. Depression and anxiety levels were higher in the female than in the male group, without being significantly different from the normal population. Nevertheless, most patients have come to terms with their disease and consider themselves happy most of the time.<\/jats:p>","DOI":"10.1136\/jmg.35.5.405","type":"journal-article","created":{"date-parts":[[2008,11,10]],"date-time":"2008-11-10T15:37:21Z","timestamp":1226331441000},"page":"405-409","source":"Crossref","is-referenced-by-count":44,"title":["Psychosocial adaptation in adolescents and young adults with Marfan syndrome: an exploratory study."],"prefix":"10.1136","volume":"35","author":[{"given":"A","family":"Van Tongerloo","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"A","family":"De Paepe","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"239","published-online":{"date-parts":[[1998,5,1]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"417","DOI":"10.1002\/(SICI)1096-8628(19960424)62:4<417::AID-AJMG15>3.0.CO;2-R","article-title":"Revised diagnostic criteria for the Marfan syndrome","volume":"62","author":"A, De Paepe; RB, Devereux; HC, Dietz; RCM, Hennekam; RE, Pyeritz","year":"1996","unstructured":"De Paepe A, Devereux RB, Dietz HC, Hennekam RCM, Pyeritz RE. Revised diagnostic criteria for the Marfan syndrome. Am 7Med Genet 1996;62:417-26.","journal-title":"Am 7Med Genet"},{"key":"ref_2","first-page":"1027","article-title":"Marfan syndrome and other disorders of fibrillin","volume-title":"Principles and practice of medical genetics","author":"Pyeritz, R.E.","year":"1996","unstructured":"Pyeritz RE. Marfan syndrome and other disorders of fibrillin. In: Rimoin DL, Connor JM, Pyeritz RE, eds. Principles and practice of medical genetics. 3rd ed. New York: Churchill Livingstone, 1996:1027-66.","edition":"3rd ed"},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"772","DOI":"10.1056\/NEJM197904053001406","article-title":"The Marfan syndrome: diagnosis and management","volume":"300","author":"Pyeritz, R.E.; Mc Kusick, V.A.","year":"1979","unstructured":"Pyeritz RE, Mc Kusick VA. The Marfan syndrome: diagnosis and management. 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Clin Psychol 1979;35:407-10.","journal-title":"Clin Psychol"},{"key":"ref_12","first-page":"101","article-title":"Gezondheid, stress en coping: de ontwikkeling van de Utrechtse Coping Lijst","volume":"12","author":"Schreurs, P.J.G.; Tellegen, B.; Van de Willige, G.","year":"1984","unstructured":"Schreurs PJG, Tellegen B, Van de Willige G. Gezondheid, stress en coping: de ontwikkeling van de Utrechtse Coping Lijst. Ned Tijdschr Psychol 1984;12:101-17.","journal-title":"Ned Tijdschr Psychol"},{"key":"ref_13","first-page":"122","article-title":"Marfan syndrome in adolescents and young adults: psychosocial functioning and knowledge","volume":"11","author":"Schneider, M.B.; Davis, J.G.; Boxer, R.A.; Fisher, M.; Friedman, S.B.","year":"1990","unstructured":"Schneider MB, Davis JG, Boxer RA, Fisher M, Friedman SB. Marfan syndrome in adolescents and young adults: psychosocial functioning and knowledge. 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