221 - CLINICAL FOLLOW-UP AND SURVEILLANCE IN FONTAN PATIENTS: REFLECTING ON THE ACC/AHA GUIDELINES

Background: The Fontan procedure has dramatically improved the life expectancy and quality of life for patients born with a single ventricle. In 2018, the ACC/AHA Guidelines included a follow-up schedule for Fontan patients at specialized congenital heart disease centres based on their Anatomic and Physiological (PhyS) classification.
This study describes how standard clinical care prior to and immediately following publication compared to the 2018 ACC/AHA guidelines of the clinical management at ACHD centres.

METHODS AND RESULTS: This was a descriptive, single-center retrospective cohort study of adult Fontan patients receiving routine care at the Yasmin and Amir Virani Provincial Adult Congenital Heart (VPACH) Program between 2015-2020.
One hundred and two patients were included, aged 26 ± 8 years and 56% male. Most patients underwent extracardiac Fontan procedures (43%) and were PhyS B (36%) at first visit. One hundred (98%) patients did not meet the guideline care in at least one investigation (Figure 1).
When pooled and separated by PhyS classification, Phys A were most likely to meet guideline care (44%) and Phys C were least likely (23%; Figure 2). Over the study period, the proportion of patients who met guideline care in each PhyS group peaked in 2018 or 2018, but then dramatically fell in 2020. There was no difference in the proportion of patients who met guideline care when comparing those with stable vs. changing PhyS classification over the study period (1% vs. 5%, p=0.48).
At least one barrier to accessing care was recorded in the medical records of 46 (45%) patients. None of the patients with recorded barriers met guideline care. The most common barrier was an inability of the clinic to contact patients in a timely fashion (41% of total patients). Other barriers included patient declined (40%), schedule conflicts (28%) and financial strain (19%). Patients outside of Greater Vancouver were more likely to report financial barriers to care than those who lived within the region (30% vs 11%, p=0.01). Most patients with these barriers to care often faced multiple, resulting in a significantly marginalised subpopulation.


Conclusion: This is the first study to analyze the frequency of Fontan patient follow-up at a large Canadian centre and shows clinic flow needs to be updated in response to the new guidelines. It is crucial that system-wide change is implemented to address barriers to care, so that we can ensure appropriate follow-up of this vulnerable patient cohort.