Pulmonary arterial hypertension (PAH), a subcategory of pulmonary hypertension (PH), is a rare and progressive disease with no known cure. Despite recent advances in therapy, the 5-year mortality of patients with PAH remains as high as 40%. Disease management through multi-disciplinary community care clinics has been shown to improve patient outcomes in many health conditions, i.e. heart failure. The potential benefits of a multi-disciplinary strategy include improved utilization and compliance with evidence-based therapies, which may lead to increased length and quality of life in people living with PAH.
To assess the range of multi-disciplinary services provided through specialized PH clinics at the international level. A team of 4 PH nurses from Canada, the USA and the UK and a PH patient living in Canada collaborated to create a survey to capture information on clinic setup, patient demographics, specialty physician and nurse availability, treatment protocols, research involvement and collaborative care in pulmonary hypertension clinics around the world.
35 questions available in English, French, Spanish, Russian, Farsi, Korean, Italian, German, and simplified Chinese. Centers were identified by the PH Associations in each country and were e-mailed the link to the questionnaire detailing the purpose of the study.
The information was collected from over 100 clinics worldwide. Over 126 responses were collected across more than 32 countries. The gathered information will be presented and discussion around a more targeted approach for creating and sustaining multidisciplinary centers of excellence for optimal treatment and management of PAH.
The survey is the beginning of a larger project. The next steps will be to create a template that identifies a PH center of excellence with patient outcomes and quality of life being the measuring sticks. Centers that meet all future decided upon criteria will eventually be accredited internationally.