Perceptions of an Implantable Cardioverter-Defibrillator: A Qualitative Study of Families with a History of Sudden, Life-Threatening Cardiac Events, and Recommendations to Improve Care

Jarrett Linder, Nadia Hidayatallah, Marina Stolerman, Thomas V. McDonald, Robert Marion, Christine Walsh, Siobhan Dolan


Objective: To identify major concerns associated with implantable cardioverter-defibrillators (ICDs) and to pro- vide recommendations to adult and pediatric physicians involved in the care of patients with ICDs.

Background: Cardiac ion channelopathies are a well-recognized cause of sudden cardiac death in infants, children, adolescents, and young adults. ICDs are effective in preventing sudden death from fatal arrhythmias in patients with known cardiac channelopathies. There is a paucity of research on the effect of ICDs on quality of life in patients with cardiac channelopathy diagnoses, especially young patients.

Methods: A qualitative study interviewing patients and families affected by inherited arrhythmias was conducted. Fifty participants with personal or family histories of cardiac events or sudden death were interviewed individually or in focus groups by clinical psychologists. All interviews were transcribed verbatim and then analyzed and coded

based on current qualitative research theory to identify themes related to the research question. Twenty-four participants discussed ICDs in their interviews.

Results: Participants reported concerns about ICDs, and these concerns were categorized into six themes: (1) comprehension and physician-patient communication; (2) anxiety; (3) restrictions and fallacies; (4) complications; (5) utility; and (6) alternative therapy. Participants noted communication breakdowns between providers and their colleagues, and between providers and their patients. Participants and their families experienced many different forms of anxiety, including worry about the aesthetics of the ICDs and fears of being shocked. Multiple restrictions, fallacies, and complications were also cited.

Conclusion: Interview themes were used to formulate recommendations for counseling and educating patients with ICDs. 


defibrillator; channelopathies; recommendations

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