Key result
Most first-time ICD recipients report high care satisfaction, yet ~48% lack end-of-life deactivation information.
Cross-Sectional (n=389)
No
Despite high overall satisfaction with ICD care, patients report substantial unmet needs regarding psychosocial support, end-of-life device deactivation discussions, continuity of care, and feedback from remote monitoring, particularly among secondary prevention and cardiac arrest survivor subgroups.
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Unmet end-of-life deactivation information needs persist despite high satisfaction; leaves open whether targeted counseling improves decision-making in ICD recipients.
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.
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Pedersen et al. (2016) conducted a cross-sectional in First-time implantable cardioverter defibrillator (ICD) or cardiac resynchronization therapy with defibrillator (CRT-D) implantation (n=389). Standard post-ICD implantation care and information provision was evaluated on Patient preferences, unmet needs for information provision and care options, and overall satisfaction with treatment. Among first-time ICD recipients, 91.1% rated overall care as good and only 13.1% were dissatisfied with information, yet 47.8% received no information on end-of-life device deactivation.
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