In early 2018, a task force on the patient’s perspective was created at the sixth World Symposium on Pulmonary Hypertension (WSPH). This task force reviewed the role of patient associations such as the Pulmonary Hypertension Association (PHA) in supporting individuals with PH, examined how clinical teams can improve care and looked at improved access to comprehensive PH care. The nine-member task force, which included Brad A. Wong, PHA’s president and CEO, and PHA Board of Trustees member Michael McGoon, M.D., explored patient associations’ role in lobbying for improved access to care and providing input on clinical research. The task force’s report is part of the January 2019 issue of the European Respiratory Journal; however, the report and others developed by WSPH task forces were released online in late December in the ERJ Early View. PHA encourages members to read all of the task force findings, linked below, in particular The importance of patient perspectives in pulmonary hypertension:
- Pulmonary hypertension in chronic lung disease and hypoxia.
- Clinical trial design and new therapies for pulmonary arterial hypertension.
- The importance of patient perspectives in pulmonary hypertension.
- Pathophysiology of the right ventricle and of the pulmonary circulation in pulmonary hypertension: an update.
- Pulmonary hypertension due to left heart disease.
- Paediatric pulmonary arterial hypertension: updates on definition, classification, diagnostics and management.
- Intensive care, right ventricular support and lung transplantation in patients with pulmonary hypertension.
- Genetics and genomics of pulmonary arterial hypertension.
- Pathology and pathobiology of pulmonary hypertension: state of the art and research perspectives.
- Diagnosis of pulmonary hypertension.
- Haemodynamic definitions and updated clinical classification of pulmonary hypertension.
- Chronic thromboembolic pulmonary hypertension.
- Risk stratification and medical therapy of pulmonary arterial hypertension.
Since 1973, WSPH has been organized to discuss the current state of the science in PH and identify future needs and priorities of the PH field in order to better treat patients. For more information about the report and PHA’s participation, email gro.noitaicossahp@troppus or call 301-565-3004.
