{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,12,7]],"date-time":"2025-12-07T03:45:40Z","timestamp":1765079140136},"reference-count":22,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2008,8,22]],"date-time":"2008-08-22T00:00:00Z","timestamp":1219363200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2008,10]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Long QT syndrome (LQTS) is a congenital disorder associated with increased risk of sudden cardiac death; LQTS patients and their families are offered diagnostic or predictive genetic testing. The purpose of this qualitative study was to investigate the psychosocial aspects of living with LQTS, to identify LQTS patients\u2019 daily life challenges and coping strategies, and to describe their experiences with healthcare services. In\u2010depth interviews were conducted with seven individuals who had been tested for long QT genetic mutation. Four of these participants had an implantable cardiac defibrillator (ICD). The participants reported that early and gradually acquired knowledge of the syndrome was an advantage. They also reported experiencing worries and limitations in daily life, but their main concern was for their children or grandchildren. Healthcare providers\u2019 minimal knowledge of LQTS resulted in uncertainty, misinformation, and even wrong advice regarding treatment. The results suggest that regional centers, with the appropriate expertise, should investigate and counsel LQTS patients and their families.<\/jats:p>","DOI":"10.1007\/s10897-008-9167-y","type":"journal-article","created":{"date-parts":[[2008,8,21]],"date-time":"2008-08-21T21:01:43Z","timestamp":1219352503000},"page":"489-498","source":"Crossref","is-referenced-by-count":35,"title":["Living with Long QT Syndrome: A Qualitative Study of Coping with Increased Risk of Sudden Cardiac Death"],"prefix":"10.1002","volume":"17","author":[{"given":"Janice","family":"Andersen","sequence":"first","affiliation":[{"name":"Department of Public Health and Primary Health Care University of Bergen Bergen Norway"},{"name":"Norwegian Porphyria Centre (NAPOS), Laboratory of Clinical Biochemistry Haukeland University Hospital Bergen Norway"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nina","family":"\u00d8yen","sequence":"additional","affiliation":[{"name":"Department of Public Health and Primary Health Care University of Bergen Bergen Norway"},{"name":"Center for Medical Genetics and Molecular Medicine Haukeland University Hospital Bergen 5021 Norway"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Cathrine","family":"Bjorvatn","sequence":"additional","affiliation":[{"name":"Department of Public Health and Primary Health Care University of Bergen Bergen Norway"},{"name":"Center for Medical Genetics and Molecular Medicine Haukeland University Hospital Bergen 5021 Norway"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Eva","family":"Gjengedal","sequence":"additional","affiliation":[{"name":"Department of Public Health and Primary Health Care University of Bergen Bergen Norway"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2008,8,22]]},"reference":[{"key":"e_1_2_6_2_1","doi-asserted-by":"publisher","DOI":"10.1159\/000084777"},{"key":"e_1_2_6_3_1","doi-asserted-by":"publisher","DOI":"10.1136\/hrt.78.2.182"},{"key":"e_1_2_6_4_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-005-0519-6"},{"key":"e_1_2_6_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1745-7599.2006.00132.x"},{"key":"e_1_2_6_6_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10840-006-9053-1"},{"key":"e_1_2_6_7_1","volume-title":"Phenomenology and psychological research.","author":"Giorgi A.","year":"1985"},{"key":"e_1_2_6_8_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.30861"},{"key":"e_1_2_6_9_1","doi-asserted-by":"publisher","DOI":"10.1159\/000084778"},{"key":"e_1_2_6_10_1","doi-asserted-by":"publisher","DOI":"10.1097\/GIM.0b013e3181612cc7"},{"key":"e_1_2_6_11_1","volume-title":"Stress, appraisal and coping","author":"Lazarus R. 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