Physical outcome and quality of life after total esophagogastric dissociation in children with severe neurodisability and gastroesophageal reflux, from the caregiver's perspective

Abstract

Background/Purpose The objective of this study is to retrospectively assess the surgical outcome and the quality of life (QOL) from the caregiver's perspective after total esophagogastric dissociation in neurologically impaired (NI) children with gastroesophageal reflux (GOR). Methods Based on O'Neill questionnaire, a QOL questionnaire was designed, which was completed by the caregivers recording the child's well being and caregiver's satisfaction preprocedure, immediately (6 months), and long-term postprocedure (median, 21 months; range, 4-38). Statistical analysis was done using Kruskal-Wallis Test and Dunn's multiple comparisons test. Results Twenty-three children underwent surgery between 2003 and 2008; 19 families participated. Ease of feeding improved significantly both immediately and long term. Statistically significant improvements were also seen in comfort and ability of the child to enjoy life, frequency of medical visits, vomiting, retching, and choking. Postoperatively, caring for the child became easier, and the caregiver's frustration in caring improved statistically, but the caregiver's overall QOL did not improve significantly. Conclusions Total esophagogastric dissociation has huge positive impact on the physical well being of the NI children experiencing GOR. The overall view of the procedure is one of success surpassing all expectations. Therefore, it should be considered alongside other antireflux procedures in NI children.