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.
OBJECTIVE
To identify major concerns associated with implantable cardioverter-defibrillators (ICDs) and to provide 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.


CONCLUSIONS
Interview themes were used to formulate recommendations for counseling and educating patients with ICDs.
Albert Einstein College of Medicine, Bronx, NY.
Jarrett
J
Linder
Ferkauf Graduate School of Psychology, Yeshiva University, Bronx, NY.
Nadia
N
Hidayatallah
Private Practice, 425 E 86th Street, Suite 1A, New York, NY.
Marina
M
Stolerman
Departments of Medicine and Molecular Pharmacology, Albert Einstein College of Medicine/Wilf Family Cardiovascular Research Institute, Bronx, NY.
Thomas V
TV
McDonald
Department of Pediatrics, Children's Hospital at Montefiore/Albert Einstein College of Medicine, Bronx, NY.
Robert
R
Marion
Department of Pediatrics, Children's Hospital at Montefiore/Albert Einstein College of Medicine, Bronx, NY.
Christine
C
Walsh
Department of Obstetrics & Gynecology and Women's Health, Albert Einstein College of Medicine/Montefiore, Bronx, NY.
Siobhan
S
Dolan