Living with Long QT Syndrome: A Qualitative Study of Coping with Increased Risk of Sudden Cardiac Death |
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Authors: | Janice Andersen Nina Øyen Cathrine Bjorvatn Eva Gjengedal |
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Institution: | (1) Department of Public Health and Primary Health Care, University of Bergen, Bergen, Norway;(2) Center for Medical Genetics and Molecular Medicine, Haukeland University Hospital, 5021 Bergen, Norway;(3) Norwegian Porphyria Centre (NAPOS), Laboratory of Clinical Biochemistry, Haukeland University Hospital, Bergen, Norway |
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Abstract: | 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’ daily life challenges and coping strategies, and
to describe their experiences with healthcare services. In-depth 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’ 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. |
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Keywords: | |
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