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Treatment of Pulmonary Arterial Hypertension: An International Environmental Scan of PH Centers Around the World

Carolyn Doyle-Cox

Gail Nicholson

Wendy Gin-Sing

Traci Stewart


Tarya Laviolette

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Conference: 2015 PH Professional Network Symposium

Release Date: 09.17.2015

Presentation Type: Abstracts

File Download: 2015 Symposium Abstract - 1009

File Size: (243 kb)

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Purpose

Disease management through multi-disciplinary community care clinics has been shown to improve patient outcomes in many health conditions, including heart failure, diabetes, chronic kidney disease and cancer. 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. Our study aims to provide a baseline snapshot of centre setup and resourcing around the world.

Background

Pulmonary arterial hypertension (PAH), a subcategory of pulmonary hypertension (PH), is a rare and progressive disease with no known cure. The prevalence is estimated to be between 15 and 50 cases per 1 million adults. The pathophysiology is still not well understood and causes of PAH are numerous. Despite recent advances in therapy, the 5-year mortality of patients with PAH remains as high as 40%.

Methods

The present study is the first to assess the range of multi-disciplinary services provided through specialized PH clinics at the international level. Our team of four PH nurses from Canada, the United States and the United Kingdom 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 PH clinics around the world. Outreach to PH Centres was conducted through PH patient associations around the world; respondents were directed to our survey through all4ph.com, a website set up to deliver our survey in nine different languages.

Results

While some of our findings were unsurprising – for example, 95% of respondents indicated that their patient population is made up of more women than men – our survey identified a number of differences in clinic setup and practice that could lead to significant inequities in patient access and treatment. Only 65% of respondents indicated that their centre has a dedicated clerk, fewer than 4 in 10 have protocols for discharging non PAH/CTEPH patients, and as many as 33% do not have a nurse to manage outpatient care. These results raise the question of how differences in clinic resources impact patient outcomes.

Conclusion

The information collected from over 100 clinics worldwide will allow for a more targeted approach to identify needs and provide further learning strategies to develop a comprehensive framework for creating and sustaining multidisciplinary centres of excellence for optimal treatment and management of PAH.