ABSTRACT
Background: The population of Adults with Congenital Heart Disease (ACHD) is expanding. A significant number will require Cardiac Rhythm Management (CRM) devices. In current UK practice, these patients are routinely seen in non-specialist CRM clinics and little is published regarding best-practice CRM programming and management in the ACHD population. Objective(s): Our objective was to establish a new model of patient-centred/-specific care delivered by specialist CRM physiologists, supported by an EP consultant (with a special interest in ACHD) in a dedicated clinic. We hoped to set new standards of care and patient experience, and improve efficiency and outcomes. Method(s): Data was collected from the electronic record system and CRM device database. A control group of non-ACHD patients was selected at random at our institution over the same period (2018-2022). Result(s): The clinic population n = 468 had a sex ratio of 0.92 (M:F) and mean age of 44 years (range 16 - 86). Mean time since primary implant was 9 years. All device types were represented: loop recorder (52), pacemaker (262), cardioverter defibrillator (116) and cardiac resynchronisation therapy devices (38). The underlying ACHD condition was: simple 46%, moderate 28% and complex 26%. Outcomes of appointments (n = 1,234) are shown vs controls (n = 126) (figure 1). Appointment and patient numbers rose year-on-year (100 to 226 patients, 281 to 367 appointments). There was a lower incidence of 'no review / reprogramming ' in ACHD CRM clinic appointments compared to the non-ACHD population, as well as a higher incidence of programming changes, however the trend over time within the ACHD group showed an increase in 'no review / reprogramming' and a decrease in reviews / reprogramming events. In contrast, non-ACHD patients had an increase in medical reviews and reprogramming required between 2018/19 and 2021/22. This is likely due to the COVID pandemic and deferred time to appointments and review. Conclusion(s): Our data demonstrate that the ACHD CRM population require additional input from the medical and scientist teams when compared to non-ACHD patients, however over time there has been a reduction in major programming/review and a commensurate increase in minor programming/discussion and no review. A reverse trend was observed in the non-ACHD patients pre- and post- COVID. These data support the proposal that specialised clinics provide the optimal management ACHD CRM clinics and should be delivered by dedicated practitioners. [Formula presented]Copyright © 2023