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A prospective study of the parents of 21 children with tuberous sclerosis complex was undertaken. Median parental age was 38 (interquartile range 34.5-45) years. Parents were randomly allocated to receive written information about the condition, or to receive verbal counseling already established in clinic. A significant difference ( P = .001) was observed in the change in the mean knowledge scores for the parent group that received written information (34.2 at baseline, 51.7 at the second visit. This impact was higher in parents with an education level of at least grade 8 ( P = .003). Parental understanding of tuberous sclerosis complex can be improved by provision of written information and should be routinely available in a readily understandable format.<\/jats:p>","DOI":"10.1177\/0883073814558121","type":"journal-article","created":{"date-parts":[[2014,11,21]],"date-time":"2014-11-21T00:32:23Z","timestamp":1416529943000},"page":"1281-1286","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":4,"title":["Parental Understanding of Tuberous Sclerosis Complex"],"prefix":"10.1177","volume":"30","author":[{"given":"Pauline","family":"Samia","sequence":"first","affiliation":[{"name":"Aga Khan University, Nairobi, Kenya"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kirsten A.","family":"Donald","sequence":"additional","affiliation":[{"name":"Division of Developmental Pediatrics, Red Cross War Memorial Children\u2019s Hospital, University of Cape Town, Cape Town, South Africa"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Birgit","family":"Schlegel","sequence":"additional","affiliation":[{"name":"Department of Pediatric Neurology, Red Cross War Memorial Children\u2019s Hospital, University of Cape Town, Cape Town, South Africa"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jo M.","family":"Wilmshurst","sequence":"additional","affiliation":[{"name":"Department of Pediatric Neurology, Red Cross War Memorial Children\u2019s Hospital, University of Cape Town, Cape Town, South Africa"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2014,11,20]]},"reference":[{"key":"bibr1-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1177\/08830738040190090301"},{"key":"bibr2-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1136\/adc.2003.026815"},{"key":"bibr3-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1177\/0883073807309250"},{"key":"bibr4-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1053\/ejpn.2001.0538"},{"key":"bibr5-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1177\/08830738040190091101"},{"key":"bibr6-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1177\/08830738040190090601"},{"key":"bibr7-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1016\/S1090-3798(08)70014-X"},{"key":"bibr8-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1177\/0883073807309788"},{"key":"bibr9-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1016\/j.yebeh.2008.05.010"},{"key":"bibr10-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1016\/j.pediatrneurol.2013.08.002"},{"key":"bibr11-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1016\/j.yebeh.2007.05.001"},{"key":"bibr12-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1111\/j.1528-1157.1996.tb00036.x"},{"key":"bibr13-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1046\/j.1528-1157.2001.42100.x"},{"key":"bibr14-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1136\/adc.2007.131516"},{"key":"bibr15-0883073814558121","volume-title":"Understanding Health Literacy: Implications for Medicine and Public Health","author":"Schwartzberg J","year":"2005"},{"key":"bibr16-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1016\/S0738-3991(02)00239-2"},{"key":"bibr17-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1046\/j.1528-1157.2001.14201.x"},{"key":"bibr18-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1136\/adc.2006.115055"},{"key":"bibr19-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1038\/nrneurol.2014.58"},{"key":"bibr20-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1016\/j.ambp.2006.10.001"},{"key":"bibr21-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1046\/j.1464-5491.2001.00468.x"},{"key":"bibr22-0883073814558121","doi-asserted-by":"publisher","DOI":"10.2146\/ajhp050070"},{"key":"bibr23-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2005-1738"},{"key":"bibr24-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2013-1859"},{"key":"bibr25-0883073814558121","volume-title":"Effective Patient Education: A Guide to Increased Adherence","author":"Falvo D","year":"2011","edition":"4"},{"key":"bibr26-0883073814558121","doi-asserted-by":"publisher","DOI":"10.1016\/j.pediatrneurol.2013.08.001"},{"key":"bibr27-0883073814558121","unstructured":"Tuberous Sclerosis Alliance. http:\/\/www.tsalliance.org\/pages.aspx?content=2. 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