Background:
Implantable cardioverter defibrillator (ICD) and cardiac resynchronization therapy (CRT-D) reduce mortality and improve functional status in selected patients with heart failure (HF). However, there are potential procedural risks and psychosocial concerns associated with device implant. This qualitative study aims to explore patients’ and families’ understanding of ICD/CRT-D, heart failure and arrhythmia in the process of decision making regarding device implant.
Methods:
We conducted 14 focus groups or interviews in Salt Lake City UT and Silver Spring MD. This study included 23 patients, who had either an ICD or CRT-D implant for primary prevention, and 14 family members. Grounded theory analysis was performed to reach a conceptual understanding of patients’ and families’ perceptions and needs.
Results:
Patients and families largely made decision of ICD/CRT implant based on physicians’ recommendations, e.g. “I really try to do what they tell me to do” (icdpt 1). Patients perceived ICD as lifesaving and CRT being helpful to improve functional status. Many patients described ICD as lifesaving by “restarting a heart if it stops”, while did not understand HF or ventricular arrhythmia. Patients perceived an urgency to consider ICD implant from their physicians, but no such urgency was perceived when they discussed about CRT-D implant. Few participants were concerned with costs, or had knowledge of potential lead malfunction, device removal and associated risks. Many emphasized the importance of information about life expectancies, what HF is, options of different devices, complications and precautions, and what to expect regarding lifestyle changes.
Conclusion:
Patients and families largely relied on the information provided by physicians and followed physicians’ guidance. They had limited understanding of their prognosis, HF and arrhythmia, and they were motivated to learn. Discussion about devices should include prognosis and healthy life style changes.
