Long term functional outcomes and health-related quality of life in patients with esophageal atresia - A tertiary centre experience.

Purpose: This study evaluates the clinical outcomes and compares the quality of life in esophageal atresia patients over the past two decades.

Method: Medical records of all esophageal atresia (EA) patients who received surgical repair between 1997 and 2022 in a tertiary center were reviewed to assess for associated anomalies and complications. Both patients and parents were invited to participate in health-related quality of life (HRQOL) studies either in person, via phone or online. The Pediatric Quality of Life Inventory Generic (Peds-QL) Core Scale Version 4.0 and Gastrointestinal Quality of Life Index (GIQLI) were used as generic and system-specific assessment tools respectively. Numeric values were expressed in medians (interquartile range).

Results: A total of 31 patients were eligible for the study. The median birth weight was 2.47 kg (1.93-3.08). The smallest patient had a birth weight of 1.36 kg. Primary repair was performed in 28 (90.3 %) patients. Anastomotic leak was reported in two (6.45 %) patients, both of them requiring revision surgery. Repeated endoscopic dilatation was required in 11 (35.5 %) patients and seven (22.6 %) required anti-reflux procedures. For the HRQOL assessment, our cohort of patients showed an overall score of 76.1 (62-93.5), physical score of 90.6 (68.8-100) and psychosocial score of 63.3 (56.7-91.7) when using the generic Peds-QL questionnaire. When using the system-specific GIQLI, they scored 120 (106.8-128). EA patients show significantly poor HRQOL as reflected in both generic and system-specific questionnaires.

Conclusion: Long term survivors of esophageal atresia demonstrated inferior HRQOL compared to normal population in both generic and system-specific assessment tools. Life-long follow-up and monitoring are essential in order to provide holistic care to these patients.