ORIGINAL ARTICLE   

Gazzetta Medica Italiana Archivio per le Scienze Mediche 2018 June;177(6):253-9

DOI: 10.23736/S0393-3660.17.03652-X

Copyright © 2017 EDIZIONI MINERVA MEDICA

language: English

Evaluation of long-term quality of life in children and young adults after neonatal surgery for esophageal atresia

Maria ATHANASOPOULOU ¹, Xenophon SINOPIDIS ² ✉, Efstratios KOLETSIS ³, Dimitrios DOUGENIS ³, Ageliki KARATZA ⁴, Gabriel DIMITRIOU ⁴, George GEORGIOU ¹

¹ Department of Pediatric Surgery, Karamandaneion Children’s Hospital, Patras, Greece; ² Department of Pediatric Surgery, University of Patras School of Medicine, University General Hospital of Patras, Patras, Greece; ³ Department of Cardiothoracic Surgery, University of Patras School of Medicine, University General Hospital of Patras, Patras, Greece; ⁴ Neonatal Intensive Care Unit, University of Patras School of Medicine, University General Hospital of Patras, Patras, Greece

BACKGROUND: Esophageal atresia (EA) is a severe congenital anomaly that affects the quality of life (QOL) of the patient from the prenatal period to adulthood. The study intends to evaluate the long-term QOL outcome in children and young adults with a history of EA, and investigate the differences of QOL perceptions between patients and their proxies.
METHODS: A specific-condition questionnaire in patient self-report and proxy versions based on existing health-related quality of life (HRQOL) and EA questionnaires was used. Out of 35 families of patients operated on from 1990 to 2014, 16 participated in the study. Analysis of information from patients (N.=8) and their proxies (N.=25) followed the survey distribution.
RESULTS: The 86-item questionnaire (12 questions on demographic and medical characteristics, 74 HRQOL physical, social and emotional aspect-related questions) yielded 2442 responses. The responses of patients and proxies varied in areas such as future life potential, ranking of life factors, social meddling, support perception (P<0.10), and confidence of finding a partner (P<0.05) among others.
CONCLUSIONS: EA negatively affects the long-term QOL of patients, but they compensate satisfactorily. Emotional growth is the most vulnerable domain, and proxies should be more open-minded to provide effective support to the patients. Further investigation is needed as this is the first time that correlation between patients’ and proxies’ perceptions of QOL has been attempted.

KEY WORDS: Esophageal atresia - Quality of life - Surveys and questionnaires - Child - Proxy