DIAGNOSIS AND TREATMENT OF ENDOCRINE COMPLICATIONS OF THALASSEMIC YOUTH AND YOUNG ADULTS FOR A BETTER QUALITY OF LIFE: THE EQUALTIY PROJECT Erasmus Project

Project Title

DIAGNOSIS AND TREATMENT OF ENDOCRINE COMPLICATIONS OF THALASSEMIC YOUTH AND YOUNG ADULTS FOR A BETTER QUALITY OF LIFE: THE EQUALTIY PROJECT

Project Key Action

This project related with these key action: Cooperation for innovation and the exchange of good practices

Project Action Type

This project related with this action type : Strategic Partnerships for vocational education and training

Project Call Year

This project’s Call Year is 2016

Project Topics

This project is related with these Project Topics: Disabilities – special needs; Health and wellbeing; Quality Improvement Institutions and/or methods (incl. school development)

Project Summary

Background: Thalassemia is the most commonly inherited genetic disorders,. Thalassemic patients have to receive regular transfusion to sustain life, as a result of thetransfusion accumulate iron overload in the body that require a treatment with iron chelators. Iron overload and iron chelators cause alot of cardiac, hepatic and endocrine complications such as delayed puberty, hypogonadism, osteoporosis, diabetes, hypothyroidism and hypopathyroidism. Although thalassemic patients have seventy percent with disabilities, they desire a and quality of life similar to peers. Thalassemia is very serious health problem and a total 6000 thalassemic patients are followed up at Hospitals of Ministry of Health and University in Turkey. Endocrine complications were important for quality life in thalassemic patients but there are not standart protocols, quides, and regular follow-up. The aims of project were to prepare a guide including regular following up patients, to train doctors and to maintain better quality life for thalassemic patients.
The responsibilities of Partners: Project Coordinator: Akdeniz Kan Hastalıkları Vakfı (AKHAV) completed Practical Guide for Effective Colloabration Preparation (PGEC), Web page, Time Table, Road Map, Financial procedures, organization of Education programs.Governorship of Antalya (CEUPA) organised the Opening anc Closing Meetings Brochures, banners, posters. In addition, Monitoring and evaluotion report was maintained by CEUPA. Antalya Training and Research Hospital (ATRH) created Patient tracking, Flow Chart for doctors. Antalya Thalassemia Association created Mobile application program for patients. Private Accredited Quisisana Hospital of Ferrara (FQH) from Italy organized the Vocational Educational Trainers Meeting in Ferrara. Barcelona University, Josep Carrera Institute (BUJCI) from Spain was responsible ICT Based Learning.
Project Activities: Four Translational Project Meetings (TPM) have been done by partners in Turkey(2), Italy and Spain. Six local meetings have been done for following up to Project together with local partners in Antalya. Six E- magazines , one E-Book and Seven short videos were published at web page. Three manuscripts were published at the Journal of Endothal in Italy. A manuscript was published at the Journal of Pediatric Endocrinology Reviewer. Training of trainers: A total 20 selected trainers have been trained five days on thalasemia, endocrine complications and good practise health care and following the patient and they issued with a certificate on March 4-8, 2018 in Ferrara-Italy. Educational book: After training in Italy, all trainers have written an educational book. Flow chart and the patient follow-up guide: The trainers have prepared a flow chart and guide. Thalassemia Seminar: Ministry of Health invited one specialist each city from Turkey, thus 100 doctors and nurses 60 different cities has been participated to Thalassemia Seminar on December 10-12, 2018 in Antalya. Trainers who trained in Italy, prepared a Educational book, flow chart and the patient follow-up guide, till to thalassemia seminar. They educated all participants in two days. Mobile application: ATA has prepared a mobile application to doctors and patients for regular following patients .
Impacts and long term benefits: In Turkey,there are a total 6000 patients with thalassemia and about 50% of patients with them have endocrine problems in Turkey. In Thalassemia Seminar, we invited all doctors who following up patients in Turkey. They were educated on endocrine complications of thalassemia and received a book, guide and flow chart for following patients. Thus a total of 3000 patients live with endocrine problems they will be benefited as indirectly in long term. In European and World, Project has been disseminated three papers were published in The Journal of Endo-Thal in Italy, one paper was published in the journal of Reviewer of Pediatric Endocrinology. In addition, six E- magazines an one E-Book have been implemented to web page for every body with free of charge. Thus, this Project has been disseminated to doctors in other countries such as European, Middle East and East Asia throught International Network of Clinicians for Endocrinopathies in Thalassemia and Adolescent Medicine (ICET-A) Thus all patients in other countries will be benefited as indirectly in long term.

EU Grant (Eur)

Funding of the project from EU: 162176,98 Eur

Project Coordinator

Akdeniz Kan Hastaliklari Vakfi & Country: TR

Project Partners

• Casa di Cura Quisisana
• UNIVERSITAETSKLINIKUM ULM.
• Fundació Institut de Recerca Contra la Leucemia Josep Carreras
• Antalya Egitim Arastirma Hastanesi
• Antalya Talasemi Dernegi
• Specialized Hospital for Active Treatment of Children “Prof. Ivan Mitev” Sofia
• Antalya Valiligi