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 own material in the national language (81%); referred to advocacy groups (68%), and relevant on-line sources (50%). Respondents believed 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.

journal_name

Endocr Connect

journal_title

Endocrine connections

authors

Iotova V,Schalin-Jantti C,Bruegman P,Broesamle M,Bratina N,Tillmann V,Hiort O,Pereira AM

doi

10.1530/EC-20-0480

subject

Has Abstract

pub_date

2020-12-01 00:00:00

issn

2049-3614

pii

EC-20-0480.R1

pub_type

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