Disease Specific Quality of Life as Part of the Long-term Follow-up for Children Born With Esophageal Atresia in an Academic Unit in South Africa - a Pilot Study

Abstract

Purpose: As neonatal mortality rates have decreased in esophageal atresia (EA), there is a growing focus on Quality of Life (QoL) in these children. No study from Africa has reported on this topic. This pilot study aimed to describe disease specific QoL in EA children and its applicability as part of long-term follow-up in an academic facility in South Africa. Methods: Disease specific QoL in children born with EA was assessed utilizing the EA-QoL questionnaire for children aged 2-17 years during a patient-encounter. Results: Thirteen questionnaires for children aged 2-7 years were completed by 5 parents. A perceived impact on their child’s eating was reported by 46-92% of parents, and less perceived impact in the other two domains. Twenty-seven questionnaires were completed by 8 children aged 8-17 years and 10 parents. Similar percentages children and parents reported a perceived impact in the eating, social relationships, and body perception domains. More than half reported a perceived impact on the child’s health and well-being. Conclusion: This study supports the concept that assessment of disease specific QoL should play a vital role in the comprehensive follow-up approach for children born with EA. We identified that parents of younger children were more likely to report eating disorders whereas parents of older children were more likely to report health difficulties with different perceptions when it came to the child’s scar.

An International Collaborative Initiative to Establish a Quality-of-Life Questionnaire for Children and Adolescents with Repair of Esophageal Atresia in 14 Countries

“…For example, two out of six children from South Africa rated seven items sensitive/uncomfortable to answer. However, in a subsequent pilot study from South Africa utilizing the EA-QOL questionnaire, the results proposed it to be a valuable part of follow-up care, especially for children aged 8–18 giving their self-report [ 55 ]. The respondents’ perception of a PROM is important and has also been evaluated in another study using the condition-specific CLEFT-Q among persons aged 8–29 with cleft lip and/or palate.…”