Information provision and follow-up of French patients with implantable cardioverter-defibrillators: The APODEC survey.

BACKGROUND:Implantable cardioverter-defibrillators reduce mortality, but the electric shocks delivered can impact the patient's quality of life. Patient education is an efficient way to reduce the stress related to both the device and the disease. AIMS:We assessed the evolution of knowledge and satisfaction of implantable cardioverter-defibrillator recipients regarding their cardiac disease, implantable cardioverter-defibrillator implantation, follow-up complications, remote monitoring and daily life recommendations. Quality of life, implantable cardioverter-defibrillator-related stress levels and remote monitoring benefits were also evaluated. METHODS:A self-administered questionnaire of 43 items was published on the French Association of Cardiac Electrical Device Wearers (APODEC) website and sent to registered patients. RESULTS:Overall, 330 patients completed the survey. Physicians were the patients' principal information source regarding their cardiac disease (86.7%) and implantable cardioverter-defibrillator (93.3%), and 90% looked for further information after the procedure, mainly on websites (78.8%). More than half of the patients were not sufficiently informed about implantable cardioverter-defibrillators before implantation (61.2%). In the patients' opinion, the best sources of further information were their physician (81.8%), patient associations (63.6%) and the Internet (45.8%). Although patient knowledge increased during follow-up, their knowledge could be improved regarding daily life with an implantable cardioverter-defibrillator (52.1%), remote monitoring (34.2%) and their cardiac disease (32.1%). Remote monitoring follow-up was used by 92.1% of patients and mostly improved their peace of mind (67.8%). Implantable cardioverter-defibrillator shocks were associated with major stress for patients receiving them (46.6%). CONCLUSION:These findings highlight the lack of information provided to implantable cardioverter-defibrillator recipients before implantation, a concerning issue to be addressed in the near future.