P1.066: Implementation and Expansion of a Multi-disciplinary Program for Standardized Longitudinal Care of Esophageal Atresia Patients

Background: Esophageal atresia (EA) is a complex condition with sequelae that continue into adulthood. Society guidelines recommend multi-disciplinary, longitudinal care, as well as surveillance of the esophagus with endoscopy and biopsy even in the asymptomatic patient. We previously reported that most physicians agree with these guidelines, but with limited implementation. We created an EA surveillance protocol and specialty clinic to address the backlog of EA patients that met criteria for surveillance endoscopy at our institution.

Methods: A multi-disciplinary EA team was established to optimize and standardize care. An EA surveillance protocol alone was only prospectively reaching patients for surveillance, therefore an EA Specialty Clinic (surgeon and gastroenterologist) was developed to expedite the rate of offered surveillance.

Retrospective review of EA patients >2 years of age was performed (IRB #22-121). Patients were considered likely lost to follow-up (LTF) if they had not completed the last documented follow-up recommendation. Three modes of communication (patient/family call x3, pediatrician call, and letter to family) were utilized to re-engage care versus confirm LTF status. Older patients were prioritized during this effort given the increased risk of esophageal pathology with age. Descriptive statistics were used to analyze results.

Results: Of 106 EA patients (age 0-32 years, Figure 1), 85% (n=90) were >2 years old. One third (30%, n=27) had undergone EA surveillance endoscopy with biopsy after protocol implementation. The remaining patients (70%, n=63) were contacted and offered an EA Specialty Clinic appointment. Through chart review, we identified 62% (n=39) of patients were likely LTF. Over half of these patients (54%, n=21) were re-engaged in clinical care, while others confirmed transfer of care. Even fewer were truly LTF after multiple contact attempts (Figure 2).

Of the remaining patients eligible for EA surveillance at our institution, the majority (65%, n=29) were scheduled in our EA Specialty Clinic with most receiving surveillance endoscopy with biopsy (79%, n=23). In total, nearly all EA patients >2 years old (93%) received surveillance counseling, and most (82%) underwent surveillance endoscopy.

Conclusion: Standardizing multi-disciplinary, longitudinal care as well as surveillance methodology is essential for quality care in EA patients. Some institutions may benefit from a more robust approach for EA surveillance. We established an EA program and stepwise approach, first implementing a surveillance protocol and then an EA Specialty Clinic to optimize the rate of offered surveillance. Through these efforts, nearly all eligible patients >2 years of age were offered surveillance. We identified a large number of patients that were lost to follow-up, and half were successfully re-engaged in care. This highlights the necessity of built-in and redundant systems to facilitate longitudinal care for patients with complex conditions.