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Patient reported outcomes (PROs) record patients’ perspectives of their diseases and their evolution, improve patient care and help to ensure best outcomes. Their use is strongly supported by patients and so it is perhaps surprising that they are not used universally in clinical medicine. Numerous barriers impede their use by both clinicians and patients, such as clinical appropriateness, data collection, time taken to complete, analyse and discuss, language availability, and licence fees, despite the availability of validated PRO Measures (PROMS).
In an ambitious project proposed by ERN Lung, it is planned to roll out a generic PROM for all of our patients to complete annually and which will be recorded in the ERN registries. The PROM, EQ-5D-5L for adults and EQ-5D-Y-5L for children asks about general health, is not disease specific and is widely used. It is short, available in all European languages for adults and many for children and can be completed electronically by patients with data transferred directly to ERN registries. It will be made available to the ERN free of charge by EuroQol.
EQ-5D can be used alongside PROMs already being used by the Core Networks. It has considerable clinical research and audit potential. Please take the opportunity to hear more about this project and tell us your views in Paris at the Annual Board Meeting in March 2026. |
