Educational and knowledge gaps within the European reference network on rare endocrine conditions

Endocrine Connections, vol. 10, pp. 37–44

Abstract

OBJECTIVE: The European Reference Network on Rare Endocrine Conditions (Endo-ERN), operational since 2017, consists of 71 health care providers (HCPs) in 19 EU member states. Our objective was to assess education and knowledge on rare endocrine conditions. DESIGN AND METHODS: A survey was developed and sent through the DIGIT-EUROSURVEY system to all Endo-ERN HCPs. RESULTS: Response rate was 55% (n = 146), 95% physicians, 58% >20 years of experience, 96% academics. Largest knowledge gaps were reported for the transition and neonatal ages, and for the GPs. Less than 50% of HCPs had structured educational rare diseases (RD) plans, while 86% used RD specific guidelines. HCPs would share educational materials within Endo-ERN (74%), and participate in an accreditation model (85%). E-learning portals of the endocrine scientific societies used 58% (ESPE) and 64% (ESE). Most participants (90%) regarded Endo-ERN coordinated educational activities (annual meetings slots, webinars, etc.) as highly important and supported a common educational platform. Social media was perceived as important for educating patients (86%) but not for physicians (36%). Seventy-five % had developed patient education materials; only 31% had specific children's materials, and by-country availability varied from 0 to 100%. Respondents provided newly diagnosed patients with their own material in the national language (81%); referred to advocacy groups (68%), and relevant online sources (50%). Respondents believed the European Commission should fund education through Endo-ERN. CONCLUSION: Identified knowledge gaps in rare endocrine disorders set the basis for fast catch-up through collaboration, alignment with patients' needs, and further development of existing and newly developed educational resources.

Authors 8

1. Violeta Iotova corresponding

   Medical University of Varna

   Affiliation as printed

   1Endo-ERN Work Package ‘Education & Training’ Paediatric Chair, Department of Pediatrics, Medical University of Varna, Varna, Bulgaria

2. Camilla Schalin‐Jäntti

   University of Helsinki · Helsinki University Hospital

   Affiliation as printed

   2Endo-ERN Work Package ‘Education & Training’ Adult Chair, Endocrinology, Abdominal Center, University of Helsinki and Helsinki University Hospital, Helsinki, Finland

3. Petra Bruegmann Aachen 3Endo-ERN Work Package ‘Education & Training’ European Patient Advocacy Group (ePAG) representative co-chair

   Endo-ERN

   Affiliation as printed

   3Endo-ERN Work Package ‘Education & Training’ European Patient Advocacy Group (ePAG) representative co-chair, Endo-ERN, Leiden, The Netherlands

4. Manuela Broesamle Aachen 3Endo-ERN Work Package ‘Education & Training’ European Patient Advocacy Group (ePAG) representative co-chair

   Endo-ERN

   Affiliation as printed

   3Endo-ERN Work Package ‘Education & Training’ European Patient Advocacy Group (ePAG) representative co-chair, Endo-ERN, Leiden, The Netherlands

5. Nataša Bratina

   Ljubljana University Medical Centre

   Affiliation as printed

   4Department of Endocrinology, Diabetes and Metabolic Disorders, University Medical Center, University Childrens Hospital, Ljubljana, Slovenia

6. Vallo Tillmann

   Tartu University Hospital

   Affiliation as printed

   5Children’s Clinic, Tartu University Hospital, Tartu, Estonia

7. Olaf Hiort

   University of Lübeck

   Affiliation as printed

   6Endo-ERN, Division of Paediatric Endocrinology and Diabetes, Department of Paediatric and Adolescent Medicine, University of Lübeck, Lübeck, Germany

8. Alberto M. Pereira Aachen 7Endo-ERN Division of Endocrinology Department of Medicine, Leiden University Medical Center

   Leiden University Medical Center

   Affiliation as printed

   7Endo-ERN, Division of Endocrinology, Department of Medicine, Leiden University Medical Center, Leiden, the Netherlands