RT Journal Article SR Electronic T1 The importance of patient perspectives in pulmonary hypertension JF European Respiratory Journal JO Eur Respir J FD European Respiratory Society SP 1801919 DO 10.1183/13993003.01919-2018 VO 53 IS 1 A1 McGoon, Michael D. A1 Ferrari, Pisana A1 Armstrong, Iain A1 Denis, Migdalia A1 Howard, Luke S. A1 Lowe, Gabi A1 Mehta, Sanjay A1 Murakami, Noriko A1 Wong, Brad A. YR 2019 UL https://publications.ersnet.org//content/53/1/1801919.abstract AB The assessment of objective measurement of cardiopulmonary status has helped us achieve better clinical outcomes for patients and develop new therapies through to the point of market access; however, patient surveys indicate that more can be done to improve holistic care and patient engagement. In this multidisciplinary review, we examine how clinical teams can acknowledge and embrace the individual patient's perspective, and thus improve the care for individual patients suffering from pulmonary hypertension by cultivating the importance and relevance of health-related quality of life in direct clinical care. At the individual level, patients should be provided with access to accredited specialist centres which provide a multidisciplinary approach where there is a culture focused on narrative medicine, quality of life, shared decision making and timely access to palliative care, and where there is participation in education. On a larger scale, we call for the development, expansion and promotion of patient associations to support patients and carers, lobby for access to best care and treatments, and provide input into the development of clinical trials and registries, focusing on the patients’ perspective.Analysis and discussion on the importance of patients' perspectives in pulmonary hypertension http://ow.ly/edOt30mgYoI