Swallowing Dysfunction and Quality of Life in Adults With Surgically Corrected Esophageal Atresia/Tracheoesophageal Fistula as Infants: Forty Years of Follow-up.

ABSTRACT

OBJECTIVES: The aim of the study was to evaluate and study the full spectrum of swallowing dysfunction and long-term disease-specific outcomes in adults with surgically corrected esophageal atresia/tracheaesophageal fistula (EA/TEF). BACKGROUND: Long-term outcomes for adults who underwent EA/TEF repair because infants are lacking. METHODS: We developed a disease-specific swallowing dysfunction questionnaire (SDQ) to assess swallowing dysfunction and quality of life (QOL) of adult patients with surgically corrected EA/TEF. Patients were surveyed with the newly developed SDQ and with a generic QOL tool (36-Item Short Form Health Survey). RESULTS: Ninety-seven patients underwent EA/TEF repair at our institution from 1950 to 1997. Forty-six (61%) patients completed the survey. Median follow-up was 40 years (range 18-63). Results suggest that some degree of swallowing dysfunction is common (82%), worse with hard consistencies (70%), and is associated with frequently needing sips of liquids to facilitate swallowing (75%). The presence of swallowing dysfunction was, however, often mild and did not seem to affect patients' food choices, or their day-to-day activities. QOL did not differ from that of the general population, regardless of the presence or absence of swallowing dysfunction. The presence of gastroesophageal reflux disease (26%), esophageal stricture (39%), or both (15%) does not account for all situations of swallowing dysfunction, nor does it significantly impact QOL. CONCLUSIONS: Swallowing dysfunction is common in adults who underwent EA/TEF repair as infants; however, patients reported minimal effect on QOL or day-to-day activities. The SDQ is a valid and reliable tool to measure the full spectrum of swallowing dysfunction in the EA/TEF repair population.