Esophageal atresia patient journey workshop

1 January 2020

Further progress was made on the esophageal atresia ‘Patient Journey’ project at a workshop held in Berlin on November 15, 2019.

This project has a multidisciplinary team with its membership drawn from surgery, nursing and patient representatives.

The project has built on the work presented at the 2019 annual meeting of ERNICA in Padua and has identified eleven major stages in the patient journey from pre-natal to retirement.

The key issues at each stage in the Patient Journey are being identified from both the clinical and parent/patient perspectives and in addition to collating relevant details (such as the follow-up checks at particular stages) the description of the journey is enhanced by the use of illustrations (which bring ‘life’ to the journey) and ‘patient friendly’ summaries which aim to simplify the associated clinical detail.

Two particular aspects of this project are
–  to build on existing good practices (e.g. the after-care and follow-up programmes developed by (or in conjunction with) patient groups in France, Germany and The Netherlands)
– to identify gaps in good practice and/or information which should be addressed.

A further workshop is planned for the New Year when it is intended to involve additional medical disciplines and the team also hopes to make further progress at the next ERNICA annual meeting in Lille, where it will also present an update on the progress made.

From ERNICA newsletter (December 2019)

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