{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T02:11:40Z","timestamp":1787019100618,"version":"build-2736575974"},"reference-count":36,"publisher":"SAGE Publications","issue":"1","license":[{"start":{"date-parts":[[2009,4,6]],"date-time":"2009-04-06T00:00:00Z","timestamp":1238976000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Health Educ Behav"],"published-print":{"date-parts":[[2010,2]]},"abstract":"<jats:p>Adolescents and young adults with Marfan syndrome (MFS) use information from self-surveillance to manage their disorder. Thirty-seven male and female adolescents with MFS aged 14 to 21 years were interviewed. They identified 58 distinct self-surveillance behaviors that fell into four categories and multiple subcategories (SCs): tracking phenotype (SCs: physical appearance, physical fitness, medical problems, and other observations); tracking medical care (SCs: medical evaluations and treatments, and pharmacotherapy); tracking behavior (SCs: personal choices and social relations); and tracking emotions (SCs: positive emotional impact and negative emotional impact). The frequency and range of self-monitoring increased with the age of the child. On average, a child of 14 self-monitored from 1 to 3 times per day, whereas a person aged 21 might self-monitor many more times per day. The patient\u2014parent\u2014physician relationship is the context for teaching adolescents and young adults self-surveillance skills. Self-surveillance by patients is first-line symptom assessment and an adjunct to medical monitoring.<\/jats:p>","DOI":"10.1177\/1090198109331670","type":"journal-article","created":{"date-parts":[[2009,4,6]],"date-time":"2009-04-06T20:54:09Z","timestamp":1239051249000},"page":"133-150","source":"Crossref","is-referenced-by-count":5,"title":["Self-Surveillance by Adolescents and Young Adults Transitioning to Self-Management of a Chronic Genetic Disorder"],"prefix":"10.1177","volume":"37","author":[{"given":"Ellen","family":"Giarelli","sequence":"first","affiliation":[{"name":"School of Nursing, University of Pennsylvania, Philadelphia,"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Barbara A.","family":"Bernhardt","sequence":"additional","affiliation":[{"name":"School of Medicine, University of Pennsylvania, Philadelphia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Reed E.","family":"Pyeritz","sequence":"additional","affiliation":[{"name":"School of Medicine, University of Pennsylvania, Philadelphia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2009,4,6]]},"reference":[{"key":"atypb1","doi-asserted-by":"publisher","DOI":"10.1080\/01460860490497903"},{"key":"atypb2","volume-title":"Transforming qualitative information: Thematic analysis and code development","author":"Boyatzis, R.E.","year":"1998"},{"key":"atypb3","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.29.2.81"},{"key":"atypb4","first-page":"185","volume":"53","author":"Callery, P.","year":"2002","journal-title":"British Journal of General Practice"},{"key":"atypb5","volume-title":"On the self-regulation of behavior","author":"Carver, C.S.","year":"2001"},{"key":"atypb6","first-page":"255","volume":"25","author":"Christian, B.J.","year":"1999","journal-title":"Pediatric Nursing"},{"key":"atypb7","volume-title":"A theory of objective self-awareness","author":"Duval, S.","year":"1972"},{"key":"atypb8","unstructured":"Feeny, D., Juniper, E.F., Ferrie, P.J., Griffith, L.E. & Gyatt, G.H. 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