Celiac disease (CD) is a lifelong disease that affects 1-3 % of the population and is mostly under-diagnosed. Caused by the ingestion of wheat, untreated CD leads to a number of severe, yet potentially preventable complications that have a profound effect on quality of life. The Focus IN CD project brought together 12 partners from Croatia, Germany, Hungary, Italy and Slovenia to develop a universal, patient-centred CD management model that has improved the quality of life of CD patients in central Europe.
- 30 January 2020
Three innovative e-learning tools for patients and health care professionals, 10 new social services and an innovative patient-centred celiac disease management model will help to foster changes and raise patients’ quality of life.
Through transnational cooperation, the project developed a range of innovative solutions for CD patients and healthcare providers, including e-learning tools, and a series of pilot activities related to the early detection of CD, improved diagnosis, and the quality of life of CD patients.
As well as harmonising and improving overall care, the project strengthened regional, national and transnational networks in CD management, including hospitals, celiac societies, public authorities, and educational and research centres.
Assessing gaps before developing solutions
The project developed five web-based questionnaires to assess gaps and regional differences in awareness, knowledge and management of CD, and to determine patient satisfaction with existing CD management models. The questionnaires were available in six languages and involved around 7 000 participants.
Feedback from the questionnaires was presented at international meetings, such as that of the European Society for Paediatric Gastroenterology Hepatology and Nutrition, and gave vital information that helped the project identify areas where the most benefit could be gained.
To develop the pilot activities and e-learning tools, a transnational and trans-sectoral approach was used, which allowed for effective knowledge- and skill-sharing among the project partners. Patients and their families were involved, which ensured that the solutions developed met the needs of the main target group.
Early intervention to improve outcomes
An important aspect of the Focus IN CD project was to enable early intervention, thus avoiding long-term health consequences.
The project organised a series of pilot activities focusing on early detection and improved diagnosis, including non-invasive rapid finger-prick blood tests in more than 1 500 kindergarten children, and searching for CD in patients’ family members and in other potential CD patients.
Other pilot activities focused on improving CD patients’ quality of life, such as a CD passport to help teenagers transition from paediatric to adult care, a mentoring programme for newly diagnosed patients, and an educational programme for restaurants in providing gluten-free food.
In addition, an e-learning tool for CD patients or their family or carers was developed – in English, Croatian, German, Hungarian, Italian and Slovene – to provide easily accessible and user-friendly information about the disease. An e-learning tool and web app for healthcare professionals were developed.The project activities received enthusiastic feedback from national celiac patient societies, medical care institutions, and medical societies across the partner countries and further afield. A working group was established to promote transfer of project activities to other European regions.
Total investment and EU funding
Total investment for the project “Focus IN CD” is EUR 1 885 419, with the EU’s European Regional Development Fund contributing EUR 1 558 329 through the “Interreg Central Europe 2014-2020” Operational Programme for the 2014-2020 programming period. The investment falls under the priority “Cooperating on innovation to make Central Europe more competitive”.