Violeta Iotova1, Camilla Schalin-Jäntti2, Petra Bruegmann3, Manuela Broesamle3, Natasa Bratina4, Vallo Tillmann5, Olaf Hiort6, Alberto M Pereira7. 1. Endo-ERN Work Package 'Education & Training' Paediatric Chair, Department of Pediatrics, Medical University of Varna, Varna, Bulgaria. 2. Endo-ERN Work Package 'Education & Training' Adult Chair, Endocrinology, Abdominal Center, University of Helsinki and Helsinki University Hospital, Helsinki, Finland. 3. Endo-ERN Work Package 'Education & Training' European Patient Advocacy Group (ePAG) representative co-chair, Endo-ERN, Leiden, The Netherlands. 4. Department of Endocrinology, Diabetes and Metabolic Disorders, University Medical Center, University Childrens Hospital, Ljubljana, Slovenia. 5. Children's Clinic, Tartu University Hospital, Tartu, Estonia. 6. Endo-ERN, Division of Paediatric Endocrinology and Diabetes, Department of Paediatric and Adolescent Medicine, University of Lübeck, Lübeck, Germany. 7. Endo-ERN, Division of Endocrinology, Department of Medicine, Leiden University Medical Center, Leiden, the Netherlands.
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.
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.
Entities:
Keywords:
Endo-ERN; education; health care professionals; knowledge gaps; network; rare endocrine diseases
Authors: Inés Adriana Cismondi; Romina Kohan; Heather Adams; Mike Bond; Rachel Brown; Jonathan D Cooper; Perla K de Hidalgo; Sophia-Martha Kleine Holthaus; Sara E Mole; Julia Mugnaini; Ana María Oller de Ramirez; Favio Pesaola; Gisela Rautenberg; Frances M Platt; Inés Noher de Halac Journal: Biochim Biophys Acta Date: 2015-06-24
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