EOS Network presents on the EoE patient's experience at the European Society for Paediatric Gastroenterology Hepatology and Nutrition (ESPGHAN) Eosinophilic Gastrointestinal Disease (EGID) conference.

This was a welcome opportunity to share our community's voice, bringing the real-world experience to paediatricians, gastroenterologists, dietitians, allergists, and pathologists from around the globe.

Our chair and founder, Amanda Cordell, was delighted to be invited to present at the first face-to-face educational Eosinophilic diseases event since the Covid 19 pandemic began. The November meeting took place in Greece, with attendees spanning 12 countries.

The event was organised with thanks to the ESPGHAN EGID working group, Paediatric Gastroenterologists: Alexandra Papadopoulou - Greece, Rok Orel - Solvenia, Noam Zevit - Israel and Jorge Amil Dias - Portugal. 

Invited speakers included international experts with different backgrounds and specific interests, aiming at elucidating different aspects of Eosinophilic Oesophagitis and Eosinophilic Gastrointestinal diseases beyond the Oesophagus.  

Key Topics Covered 

• Interpreting the clinical manifestations and the laboratory findings of different EGIDs 
• Choosing the best available treatment options
• Decreasing variations in clinical practice
• Improving effectiveness and quality of care

EOS Network's Representation

When presenting our community’s experience of EoE, Amanda shared the challenges faced by an average delay in diagnosis of eight years for adult patients and three years for children, covering the impact on quality of life, including physical, financial and social factors. 

Amanda also highlighted the lifelong burden of this chronic disease and complex phases, such as transitioning from paediatric to adult care. She also demonstrated the need for holistic care including multidisciplinary services for gastroenterology, dietetic management, and the common concomitant health problems of allergy, asthma, and eczema.

Amanda commented,

When completing our survey poll questions, it was pleasing to see that 57% of attendees reported working in a joint allergy and gastroenterology paediatric EoE service, which we hope will become future standard practice.

However, it was interesting to learn that transitioning this complex care into adult services is an international challenge with the results from the attendees poll clearly demonstrating the need for increased awareness, education and formal transition pathway across specialities.

 

As a charity, we continue to champion the importance of collaborative work through paediatric and adult services as a cornerstone value of our EOS Global Professionals Network. We welcome those interested in EGIDs to register with us and join the network of over 250 healthcare providers in 34 countries around the globe.

The dedication and appetite for improving EGID patients outcomes was demonstrated by the determination of the faculty, speakers and attendees to ensure this event took place safely in these difficult times. I was proud to be invited and share our community’s experience. 

 - Amanda Cordell
Chair, EOS Network

Patient-Centred Care

Dr Marcus Auth – UK Paediatric Gastroenterologist, EOS Network medical advisor and member of the British and European guideline development groups presented on the impact on quality of life as an important measurable outcome, including recognising patients and carers struggles with dietary and off label treatments. In his review of the global evidence for EoE quality of life during the development of care guidelines, he found that further research and measurement tools are needed to help recognise and address patients’ unmet needs. 

This was an outstanding event that brought experts, patient representatives and guideline members together stimulating collaboration to optimise all aspects of disease management.

- Dr Marcus Auth

An International Approach

A jam-packed two-and-a-half-day programme involved speakers from all over the world.

Click here for the full programme

The ESPGHAN EGID Working Group described current diagnosis and treatment options. Other talks were on: histology by Pathologist Fatima Carneiro – Portugal, oesophageal complexities with Frederic Gottrand – France, alternative manometry testing with Michiel van Wijk – Netherlands and treatment-resistant EoE by Carolina Gutierrez – Spain.

Salvatore Olivia, who has presented previously in our EoE What you need to know webinars, shared the data from a European registry and provided multiple case studies demonstrating the different scenarios of patient’s presentation and management needs.

Experts from other fields spoke on the rarer subjects of Hypereosinophilic syndrome and the incidence of comorbid connective tissue diseases.

Webinar presentations with the latest research were given from the team at The Consortium for Eosinophilic Gastrointestinal Disease Research CEGIR, including Marc Rothenberg - Cincinnati, Glenn Futura - Mayo Clinic and Evan Dellon - UNC sharing the advances in genetics, diagnostics, and future treatments. This was followed by Nikil Thapar - Australia, who shared his findings in EoE dysmotility from the other side of the globe. 

Attendee Paediatric Gastroenterologist Dr Alfonso Rodriguez Herrera from Dublin, Ireland said,

This conference was an opportunity to get an update about eosinophilic diseases through a compilation of well-selected information. The direct interaction with leading exports who kindly shared their knowledge, experience, and frustration about the many questions that are still pending to be solved was reassuring. It was especially useful to me to hear the voice of the affected people, who EOS Network represented.

- Dr Alfonso Rodriguez Herrera

As just one of the multiple projects that the European EGID group has been working on throughout the pandemic, this event was a huge success, indicating the growing interest in Eosinophilic Gastrointestinal Diseases spreading throughout the globe.

EOS Network is delighted to be working with the ESPGHAN EGID working group as the patient's voice in the forthcoming European Paediatric Guidelines, another vital step forward in improving patient outcomes, due to be published in 2022.

Thank you to the organisers of this constructive and informative EGID educational event. 

Everything we do is done to better treat our patients.

- Dr Alexandra Papadopoulou
Conference Chair