ECE2020 Audio ePoster Presentations General Endocrinology (17 abstracts)
The extent of variation in the reporting of clinical activity by reference centres in the field of rare pituitary and thyroid disorders within Endo-ERN, a new reference network for rare endocrine conditions in Europe
Friso de Vries 1 , Mees Bruin 1 , Angelica Cersosimo 1 , Faisal Ahmed 2 , Robin Peeters 3 , Nienke Biermasz 1 , Olaf Hiort 4 & Alberto Pereira 1
1Leiden University Medical Center (LUMC), Endocrinology, Leiden, Netherlands; 2Queen Elizabeth University Hospital, Glasgow, United Kingdom; 3Erasmus MC, Rotterdam, Netherlands; 4Universitätsklinikum Schleswig-Holstein – Zentrale Lübeck, Lübeck, Germany
Objective: Self-reported volume of patients and specific interventions is a specific network criterion that needs to be fulfilled by reference centres that are eligible for inclusion within Endo-ERN. The aim of the present study is to evaluate how self-reported volume data in the original applications were obtained, which data are retrievable, and which set is best suitable to use for future centre evaluations. This overview is provided for two Main Thematic Groups (MTGs) of Endo-ERN: Pituitary and Thyroid.
Design and methods: Review of application forms and continuous monitoring data of Endo-ERN and a survey distributed to participating centres. A list of ‘key procedures’ for the assessment of the performance of RCs was composed with the help of the chairs of the concerned MTGs.
Results: In the application forms, the variation in number of procedures ranged from 20 to 5500/year for Pituitary and from 10 to 2700/year for Thyroid). The survey response rate was 63% for both MTGs. The number of performed key procedures also varied widely. However, ranges were significantly smaller than those of performed procedures in general. The median numbers of new patients reported for the ERN continuous monitoring program (2017 and 2018) were comparable with those reported in the application and survey, however, some centres reported large alterations in the number of new patients.
Conclusions: The number of new patients, patients under chronic care, and related procedures vary widely between RCs. In addition to the size of the practice, this is also due to non-uniform definitions of new patients and procedures used by the reporting RCs. Application of uniform definitions, in addition tothe development of MTG subtheme specific performance indicators, is urgently needed. This will allow a more reliable assessment and comparison of RC and overall Endo-ERN performance.
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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