Living with an implantable cardioverter defibrillator: patients' preferences and needs for information provision and care options.

Aims: The clinical management and care of patients with an implantable cardioverter defibrillator (ICD) has shifted from face-to-face in-clinic visits to remote monitoring. Reduced interactions between patients and healthcare professionals may impede patients' transition to adapting post-implant. We examined patients' needs and preferences for information provision and care options and overall satisfaction with treatment.

Methods and results: Patients implanted with a first-time ICD or defibrillator with cardiac resynchronization therapy (n = 389) within the last 2 years at Odense University Hospital were asked to complete a purpose-designed and standardized set of questionnaires. The level of satisfaction with information provision was high; only 13.1% were dissatisfied. Psychological support for patients (39.9%), their relatives (43.1%), and deactivation of the ICD towards end of life (47.8%) were among the top five topics that patients reported to have received no information about. The top five care options that patients had missed were talking to the same healthcare professional (75.2%), receiving ongoing feedback via remote monitoring (61.1%), having a personal conversation with a staff member 2-3 weeks post-implant (59.6%), having an exercise tolerance test (52.5%), and staff asking how patients felt while hospitalized (50.4%). Patients with a secondary prevention indication and cardiac arrest survivors had specific needs, including a wish for a psychological consult post-discharge.

Conclusion: Despite a high satisfaction level with information provision, particular topics are not broached with patients (e.g. device activation) and patients have unmet needs that are not met in current clinical practice.