{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,23]],"date-time":"2026-01-23T21:30:09Z","timestamp":1769203809123,"version":"3.49.0"},"reference-count":27,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2005,9,7]],"date-time":"2005-09-07T00:00:00Z","timestamp":1126051200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["American J of Med Genetics Pt A"],"published-print":{"date-parts":[[2005,10]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Can a parent adjust to the idea that its child is at risk for a sudden death? This question is raised by a diagnostic procedure in which children were tested for an inherited Long QT Syndrome (LQTS). This potentially life\u2010threatening but treatable cardiac arrhythmia syndrome may cause sudden death, especially in children and young adults. The long\u2010term psychological effects are described for parents whose children were tested for inherited LQTS. The adverse short\u2010term impact of such testing has been described previously. The goal of this investigation is to determine whether this distress endures. Thirty\u2010six parents completed measures of psychological distress. With the twenty\u2010four parents of carrier children, a semi\u2010structured interview was held 18 months after DNA disclosure. Parents of carrier children reported more distress than parents of non\u2010carrier children. Parents of carrier children remained vulnerable to high levels of distress; up to one\u2010third of these parents showed clinically relevant high levels of distress. High levels of distress were reported by parents of carrier children who (1) were highly distressed at previous assessments, (2) were familiar with the disease for a longer time, (3) had experienced a sudden death in the family, (4) were lesser educated, and who (5) were unsatisfied with the given information. Parents were particularly concerned about possible hazardous behavior during puberty. We conclude that the continuous threat of developing LQTS symptoms despite prophylactic treatment affected the psychological well\u2010being of the parents for a long time. In light of the tempetuous developments in the areas of cardiac genetics, periodical information on new insight and developments may act as a buffer for the parents' (growing) concerns about their child's inherited disorder. \u00a9 2005 Wiley\u2010Liss, Inc.<\/jats:p>","DOI":"10.1002\/ajmg.a.30861","type":"journal-article","created":{"date-parts":[[2005,9,7]],"date-time":"2005-09-07T19:48:13Z","timestamp":1126122493000},"page":"107-112","source":"Crossref","is-referenced-by-count":53,"title":["Can parents adjust to the idea that their child is at risk for a sudden death?: Psychological impact of risk for long QT syndrome"],"prefix":"10.1002","volume":"138A","author":[{"given":"Karin S.W.H.","family":"Hendriks","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"F.J.M.","family":"Grosfeld","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"J.P.","family":"van Tintelen","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"I.M.","family":"van Langen","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"A.A.M.","family":"Wilde","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"J.","family":"van den Bout","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"H.F.J.","family":"ten Kroode","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2005,9,7]]},"reference":[{"key":"e_1_2_7_2_1","volume-title":"Beck depression inventory","author":"Beck AT","year":"1996"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1159\/000395074"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1001\/archpsyc.1961.01710120031004"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.ejhg.5200532"},{"key":"e_1_2_7_6_1","first-page":"164","article-title":"De Schok Verwerkings Lijst [Impact of event scale]","volume":"40","author":"Brom D","year":"1985","journal-title":"Ned Tv Psychologie"},{"key":"e_1_2_7_7_1","doi-asserted-by":"publisher","DOI":"10.1001\/archpedi.1996.02170360021003"},{"key":"e_1_2_7_8_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.10926"},{"key":"e_1_2_7_9_1","doi-asserted-by":"publisher","DOI":"10.1037\/0278-6133.16.1.63"},{"key":"e_1_2_7_10_1","first-page":"897","article-title":"Psychological functioning before predictive testing for Huntington's disease: The role of the parental disease, risk perception, and subjective proximity of the disease","volume":"36","author":"Decruyenaere M","year":"1999","journal-title":"J Med Genet"},{"key":"e_1_2_7_11_1","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.35.9.745"},{"key":"e_1_2_7_12_1","first-page":"103","volume-title":"Beyond a shadow of doubt: Assessing the psychological impact predictive genetic testing for multiple endocrine neoplasia type 2 [dissertation]","author":"Grosfeld FJM","year":"2000"},{"key":"e_1_2_7_13_1","doi-asserted-by":"publisher","DOI":"10.1002\/1096-8628(20001002)94:4<316::AID-AJMG10>3.0.CO;2-N"},{"key":"e_1_2_7_14_1","doi-asserted-by":"publisher","DOI":"10.1159\/000084778"},{"key":"e_1_2_7_15_1","doi-asserted-by":"publisher","DOI":"10.1097\/00006842-197905000-00004"},{"key":"e_1_2_7_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/0167-8140(93)90073-H"},{"key":"e_1_2_7_17_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0165-0327(00)00193-2"},{"key":"e_1_2_7_18_1","doi-asserted-by":"publisher","DOI":"10.1002\/1096-8628(20010101)98:1<15::AID-AJMG1014>3.0.CO;2-0"},{"key":"e_1_2_7_19_1","unstructured":"OosterwijkM.2004.Cognitive strategies of breast cancer patients in relation to their adaptation process: A longitudinal study [dissertation]. 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