Purpose: Despite their mortality benefit, Implantable Cardioverter Defibrillators (ICDs) are associated with potential harm. This study aims to understand the patient's perspective about factors important in their decision about receiving an ICD for the primary prevention of sudden cardiac death.
Method: This qualitative study utilized open-ended in-depth interviews with 20 patients who have been offered an ICD. We recruited patients who both did and did not decide to proceed with ICD implantation. Interviews were recorded and transcribed and data were analyzed through the theoretical lens of patient-centered care using the constant comparative method.
Results: Our sample included 20 patients (13 with ICDs; 7 who declined ICDs). Patients with ICDs reported that they discovered some of the risks of the device post-implantation, saw the device as an insurance policy, and felt it was important to follow the physicians' recommendations. Patients who refused ICDs reported that they did not relate to the numbers and felt the ICD was not indicated in their situation. In addition to a discussion of the risks and benefits, both groups of patients would like to see patient stories and the shape of the device included in interventions to improve ICD decision making.
Conclusions: Patients have varied experience with and needs surrounding ICD decision making. Some patients were unaware of important risks or disadvantages associated with ICDs until after the ICD was implanted. Interventions designed to help patients make decisions surrounding ICDs that are sensitive to patients' values and ability to understand complicated information are needed to improve the quality of ICD decision making.
