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Educational and knowledge gaps within the European reference network on rare endocrine conditions
Violeta Iotova1, Camilla Schalin-Jäntti2, Petra Bruegmann3
1Endo-ERN Work Package 'Education & Training' Paediatric Chair, Department of Pediatrics, Medical University of Varna, Varna, Bulgaria.
Endocrine Connections
|December 8, 2020
Summary
Healthcare providers in the European Reference Network on Rare Endocrine Conditions (Endo-ERN) identified knowledge gaps in rare endocrine disorders. Collaboration and enhanced educational resources are crucial for improving care.
Area of Science:
- Endocrinology
- Rare Diseases
- Medical Education
Background:
- The European Reference Network on Rare Endocrine Conditions (Endo-ERN) comprises 71 healthcare providers across 19 EU member states.
- Established in 2017, Endo-ERN aims to improve care for rare endocrine conditions.
Purpose of the Study:
- To assess the current level of education and knowledge regarding rare endocrine conditions among Endo-ERN healthcare providers.
- To identify specific areas and demographic groups with the greatest knowledge deficits.
Main Methods:
- A survey was distributed to all Endo-ERN healthcare providers via the DIGIT-EUROSURVEY system.
- The survey collected data on experience, educational practices, and perceived needs related to rare endocrine diseases.
Main Results:
- A 55% response rate (n=146) was achieved, with 95% of respondents being physicians and 58% having over 20 years of experience.
- Significant knowledge gaps were noted in transition and neonatal ages, and among general practitioners. Less than 50% had structured rare disease educational plans, though 86% used specific guidelines.
- HCPs strongly supported collaborative educational activities, accreditation models, and a common educational platform, with 90% deeming Endo-ERN coordinated activities highly important. Patient education materials were developed by 75%, but children's materials were less common (31%).
Conclusions:
- Identified knowledge gaps in rare endocrine disorders necessitate collaborative efforts to improve education and training.
- Developing and aligning educational resources with patient needs is essential for advancing care in rare endocrine conditions.
- Further development of existing and new educational resources, supported by European Commission funding via Endo-ERN, is recommended.