Original ArticleA patient led, international study of long term outcomes of esophageal atresia: EAT 1
Section snippets
Background
Outcomes in esophageal atresia (OA) have improved in the last 50 years with survival now of more than 90% [1], [2], [3] leading to an increasing population of long term survivors. While our understanding of short term outcomes in infants with OA is good [4], [5], [6], [7], longer term functional outcomes are more poorly understood with a limited research base [8], [9], [10]. There is increasing interest therefore in longer term outcome studies, and results of such studies potentially impact
Methods
This study was conceptualized as a questionnaire which was then designed by the board of EAT (see author list) with support from a Professor of Quality of Care (MvD). It was designed to be a patient/carer focused study looking at outcomes of specific interest to those groups. The questionnaire was therefore designed to assess the following keys areas of interest:
- 1.
Current symptomatology
- 2.
Patient/carer satisfaction
- 3.
Quality of life (QoL)
Demographics and operative details were also obtained as part of
Demographics
1100 responses were received from an estimated 2500 members of EAT organizations invited to participate. Following exclusions, 928 responses (56% male and 44% female) were analyzed with a patient age range of 1 month to 60 years. For analysis, patients were divided into the following age groups, < 5 years (42% of responses), 5–10 years (26%), 11–17 years (16%) and 18 years and older (16%).
Responses were received from 25 different countries (Fig. 1). Smaller numbers of responses were also received from
Discussion
The EAT 1 survey offers unique, international patient directed short, medium and long term follow-up data on one the largest cohorts of OA patients in the literature to date. It highlights the clinical long term morbidity that OA patients suffer from and how these may change with age. It also importantly examines the often ignored quality of life issues faced by this patient group. The large size of this study group makes it more representative of the wider international population of OA
Acknowledgments
This collaborative work has involved many different people from the design of the study to data collection and subsequent analysis.
The advisory work and support of Prof Rene Wijnen, Head of Paediatric Surgery and Professor Monique van Dijk and their colleagues at Sofia Children's Hospital, Erasmus MC is greatly appreciated. Prof van Dijk advised on questionnaire design.
All member groups and the patients of EAT are acknowledged for their assistance in making this study possible.
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