An assessment of quality of life of operated cases of esophageal atresia in the community

J Indian Assoc Pediatr Surg. 2016 Jul-Sep;21(3):131-8. doi: 10.4103/0971-9261.182588.

Abstract

Aims: To evaluate the outcome of the operated children of esophageal atresia (EA) focusing on their early and late morbidity and mortality and quality of life (QoL) of survivors.

Settings and design: A cross-sectional follow-up with retrospective analysis of available medical and surgical records of children who underwent repair for EA.

Materials and methods: The medical records of the children who underwent repair for EA during the period from 2000 to 2011 at the Christian Medical College Hospital, Vellore, were collected retrospectively. Patients with parents were invited to visit the hospital for follow-up and nutritional status, digestive and respiratory symptoms, status of associated anomalies and QoL assessment of children done. QoL assessment was done using the PedsQL™ 4.0 generic core scales questionnaire comprising 4 scale scores: physical, emotional, social functioning, and school functioning. Mean scores are calculated based on a 5-point response scale for each item and transformed to a 0-100 scale with a higher score representing better QoL.

Statistical analysis used: Statistical Package for Social Sciences (SPSS) version 16 using Chi-square or Fisher's exact test.

Results: Of 79 patients operated during the said period, there were 10 deaths and a total of 69 (87%) children survived. Of the 66 patients available for follow-up, we interviewed 30 parents and children while for the remaining 36 children, out-patients charts were reviewed retrospectively. Mean follow-up duration was 3.56 years. The height and weight for age measurement showed 47% and 56% of children respectively as below the 5(th) percentile. Main problems faced by operated EA children were of the respiratory (26%) and gastroesophageal (36%) tracts. In spite of the mentioned problems faced, the overall QoL of this group appeared good. In 23 of 30 patients, who answered PedsQL™, more than 70% had scores >85 out of 100 in QoL scoring.

Conclusions: While survivals of the children born with EA have improved, these children still face nutritional, respiratory, and gastroesophageal problems during their early childhood. In spite of this, the overall QoL of this patient group appears good.

Keywords: Children; esophageal atresia; follow-up studies; quality of life.