Selection of patient-reported outcome measures in pulmonary arterial hypertension clinical trials, a systematic review and metanalysis, European Respiratory Review, May 14, 2025

Health-related quality of life (HRQoL ) is an important outcome measure in pulmonary arterial hypertension research, but an evaluation of which patient questionnaires work best had not been done up to now. Also, different studies use different questionnaires, making it hard to compare results. A systematic review (PROSPERO ID: CRD42024484021) was conducted following Preferred Reporting […]

Selection of patient-reported outcome measures in pulmonary arterial hypertension clinical trials, a systematic review and metanalysis, European Respiratory Review, May 14, 2025 Read Post »

Key insights from the “Patient Perspective” article in the World Symposium on Pulmonary Hypertension (WSPH) proceedings, European Respiratory Journal, August 29, 2024

The full proceedings of the World Symposium on Pulmonary Hypertension which was held in Barcelona 29.6-1.7, 2024, have now been published in the European Respiratory Journal at this link. The proceedings cover the work of the 15 task forces; Task Force n°1’s article is titled “Exploring the patient perspective in pulmonary hypertension” (see below for

Key insights from the “Patient Perspective” article in the World Symposium on Pulmonary Hypertension (WSPH) proceedings, European Respiratory Journal, August 29, 2024 Read Post »

Patients as teachers? A pilot experiment of patient-led online learning modules for HCPs in Canada proves the effectiveness of this approach, “BMC Medical Education”, May 10, 2024

A study titled “Patients as teachers: a within-subjects randomized pilot experiment of patient-led online learning modules for health professionals” was published on BMC Education on May 10, 2024. Medical education programs are increasingly including presentations by individuals with lived experiences. The authors of the article say that relying on a limited number of speakers may

Patients as teachers? A pilot experiment of patient-led online learning modules for HCPs in Canada proves the effectiveness of this approach, “BMC Medical Education”, May 10, 2024 Read Post »

Driving innovation and patient-centred care in pulmonary hypertension: the inspiring journey of Dr. Joanna Pepke-Zaba, March 28, 2024

Dr. Joanna Pepke-Zaba, renowned consultant respiratory physician at Royal Papworth Hospital, recently received a prestigious European Respiratory Society (ERS) lifetime achievement award, marking another milestone in her illustrious career. In an interview with Saša Janković, recently published on March 18, 2024 on “Hospital Health Care Europe”, Dr. Pepke-Zaba discusses her dedication to advancing research and

Driving innovation and patient-centred care in pulmonary hypertension: the inspiring journey of Dr. Joanna Pepke-Zaba, March 28, 2024 Read Post »

Why quality indicators for pulmonary hypertension care are important from a patient perspective, Pisana Ferrari

It was a great honour to be invited to speak at the ERN-LUNG webinar on quality indicators for adult pulmonary arterial hypertension care, which took place on December 8, 2023, where I was asked to explain why these are important from a patient perspective. The webinar referenced an article in the European Journal of Heart

Why quality indicators for pulmonary hypertension care are important from a patient perspective, Pisana Ferrari Read Post »

Recording of the December 8, 2023 ERN-LUNG webinar on quality Indicators for pulmonary arterial hypertension is available

On December the 8th 2023 the European Reference Network for Rare Lung Diseases (ERN-Lung) hosted a webinar titled “Quality Indicators in Healthcare, the example of Pulmonary Hypertension”. The webinar refers to the scientific paper on quality indicators published in the European Journal of Heart Failure, in connection with the publication of the 2022 European Society

Recording of the December 8, 2023 ERN-LUNG webinar on quality Indicators for pulmonary arterial hypertension is available Read Post »

“Patient partnership in cardiovascular clinical trials”, European Heart Journal

This paper, titled “”Patient partnership in cardiovascular clinical trials”, published in the European Heart Journal, assesses current initiatives and identifies opportunities for furthering meaningful patient involvement in cardiovascular clinical research. According to the authors, patients are fundamentally the ultimate beneficiaries of medical treatments, and their active engagement as contributors and decision-makers in the product development

“Patient partnership in cardiovascular clinical trials”, European Heart Journal Read Post »

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