Dataset Information

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

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.

SUBMITTER: Iotova V

PROVIDER: S-EPMC7923050 | biostudies-literature | 2021 Jan

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Iotova Violeta V Schalin-Jäntti Camilla C Bruegmann Petra P Broesamle Manuela M Bratina Natasa N Tillmann Vallo V Hiort Olaf O Pereira Alberto M AM

Endocrine connections 20210101 1

<h4>Objective</h4>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.<h4>Design and methods</h4>A survey was developed and sent through the DIGIT-EUROSURVEY system to all Endo-ERN HCPs.<h4>Results</h4>Response rate was 55% (n = 146), 95% physicians, 58% >20 years of experience, 96% academics. Largest know ...[more]

PMID: 33289690

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Dataset Information

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

Objective

Design and methods

Results

Conclusion

Publications

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

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