Questionnaire survey on the long-term quality of life of patients with congenital esophageal atresia in Japan.

PURPOSE: To identify the current challenges faced by children with surgically treated esophageal atresia (EA) at the start of elementary, junior high, and high schools.

METHODS

Questionnaire surveys were administered at the pediatric surgery departments of 19 representative institutions across Japan between December 1, 2018, and January 31, 2019. The surveys included gross classification, status of hospital visits, surgical procedures, postoperative complications, symptoms at the time of the final evaluation, status of school attendance, and related information at 7, 13, and 16 years old.

RESULTS

A total of 572 children with EA were included. Data from 59 first-grade elementary school students, 42 first-year junior high school students, and 30 first-year high school students were extracted for this study. Most postoperative complications remained unresolved, and many children with EA continued to exhibit symptoms at the final evaluation. Despite many children having clinical and academic problems, 33% (43/131) were lost to follow up.

CONCLUSION

Older children with EA experience various problems. Long-term follow-up and continuous support are important for all EA patients.