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01-10-2008 | Original Research

Living with Long QT Syndrome: A Qualitative Study of Coping with Increased Risk of Sudden Cardiac Death

Authors: Janice Andersen, Nina Øyen, Cathrine Bjorvatn, Eva Gjengedal

Published in: Journal of Genetic Counseling | Issue 5/2008

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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Title: Living with Long QT Syndrome: A Qualitative Study of Coping with Increased Risk of Sudden Cardiac Death
Authors: Janice Andersen
Nina Øyen
Cathrine Bjorvatn
Eva Gjengedal
Publication date: 01-10-2008
Publisher: Springer US
Published in: Journal of Genetic Counseling / Issue 5/2008
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-008-9167-y

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