Physical outcome and quality of life after total esophagogastric dissociation in children with severe neurodisability and gastroesophageal reflux, from the caregiver's perspective Taqi Zaidi a, , Cherry Sudall b , Lisa Kauffmann c , Semiu Folaranmi a , Basim Khalil a , Antonino Morabito a a Department of Paediatric Surgery, Royal Manchester Children Hospital, Manchester M13 9WL, United Kingdom b Manchester Medical School, University of Manchester, Manchester M13 9PL, United Kingdom c Community Paediatrician, Royal Manchester Children Hospital, Manchester M13 9WL, United Kingdom Received 31 July 2009; revised 29 April 2010; accepted 30 April 2010 Key words: Gastroesophageal reflux; Neurological impairment; Quality of life; Gastroesophageal dissociation; Caregiver satisfaction 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. © 2010 Elsevier Inc. All rights reserved. Gastroesophageal reflux disease (GORD) is a common pediatric problem that is particularly frequent in neurolog- ically impaired (NI) children [1-6], occurring in up to 70% [6]. In nondisabled children, the natural history is for GORD to improve and eventually resolve. This rarely happens in NI children, in whom it usually persists and often proves very difficult to treat. It can lead to various complications such as vomiting, failure to thrive (FTT), apnea, and aspiration pneumonia. Difficulties in feeding and a learned aversion to Corresponding author. Tel.: +44 7863297363, +44 161 905 1380. E-mail address: shahzaidi73@hotmail.com (T. Zaidi). www.elsevier.com/locate/jpedsurg 0022-3468/$ see front matter © 2010 Elsevier Inc. All rights reserved. doi:10.1016/j.jpedsurg.2010.04.022 Journal of Pediatric Surgery (2010) 45, 17721776