Childhood Outcomes after Esophageal Atresia Repair

Abstract

The aim of this thesis is to enhance understanding of post-operative outcomes following reconstructive surgery for esophageal atresia (EA), with a particular focus on health-related quality of life (HRQOL) and feeding difficulties, within a Swedish context. The thesis is based on cross-sectional surveys and questionnaires completed by children born with EA and their parents. Study I and II were single-center and focusing on parent-reported feeding difficulties. Study III-IV were national multi-center studies and, to our knowledge, the first in the world to evaluate disease-specific HRQOL, post-operative morbidity and feeding difficulties in children undergoing delayed repair of esophageal atresia (DREA), while also providing the first direct comparison with outcomes after primary anastomosis (PA). We found that children with EA experience a high prevalence of feeding difficulties, particularly among younger children. Feeding difficulties were associated with lower generic HRQOL, specific congenital characteristics, and surgical complications, and were more frequent after DREA than PA. Children treated with DREA reported HRQOL scores (both generic and condition-specific) comparable to those of children who underwent PA. Both groups experienced similar and often high levels of aerodigestive symptoms, although the DREA group more frequently was given different kinds of treatments. The findings of this thesis demonstrate that a structured, multidisciplinary follow-up, along with clear clinical recognition and proactive management of feeding difficulties and other EA-related symptoms, are important for fostering effective coping strategies and minimizing negative impacts on HRQOL. To advance the research field, a qualitative and patient-derived development of an EA-specific symptom severity score is needed.