The webinar on “Patient-Reported Outcome Measures (PROMs) and their role in pulmonary hypertension care and research”, which took place on July 27, 2023, was part of an educational initiative by the Alliance for Pulmonary Hypertension. The discussions were moderated by Dr. Andreas Reiman, CEO of admedicum, a patient engagement consultancy based in Germany. Dr. Simon Gibbs, from the National Heart and Lung Institute at Imperial College, London, Lead of the Patient Reported Outcomes and Quality of Life Functional Committee of ERN-Lung and Gergely Meszaros, patient advocate and Project Manager at ERN-Lung, were the guest speakers. Dr. Gibbs explained what PROMs are and how they aim to assess the impact of a disease on life and quality of life as reported by patients. Generic and disease-specific PROMs were discussed, and examples of the latter were provided. The 2022 European Respiratory Society (ERS) and European Society of Cardiology (ESC) clinical guidelines on the diagnosis and treatment of pulmonary hypertension, for the first time ever, feature a dedicated section for PROMs. Dr. Gergely Meszaros, who is co-author of the guidelines, explained the new guidelines’ emphasis on self-reported quality of life, multidisciplinary team involvement, and patient empowerment. Both speakers acknowledged the challenge of limited scientific literature supporting PROMs’ impact on patient health, which explains the low “level of evidence” given to them by the authors of the guidelines. Dr. Gibbs noted PROMs’ potential to improve communication, decision-making, and patient satisfaction. ERN-Lung is also playing a key role in advancing PROM-related initiatives, with Dr. Simon Gibbs and Dr Gergely Meszaros actively involved in the discussions.
Watch the webinar here
