30 October 2023

Pulmonary Hypertension Global Patient Survey (PH GPS)

Are you living with pulmonary hypertension? Do you know someone who is? We need your help.

Survey now open:

Are you a patient living with pulmonary hypertension? Do you care for someone who is?

We invite you to complete our PH GPS survey to help improve our understanding of the experience of care which patients receive worldwide. It is the first global survey to assess the impacts of pulmonary hypertension on patients and their lived experiences.

Patients' and carers' participation in this survey plays a pivotal role in shaping future research and enhancing healthcare to benefit patients on a global scale.

“I want to thank the whole pulmonary hypertension community for contributions to create the survey and for encouraging patients living with pulmonary hypertension to complete it. This survey will give us the most valuable knowledge on how the condition is affecting patients and their families; and will also improve our understanding on the ways we care for the patients across the world. We thank patients for their help to our research”. Dr Joanna Pepke-Zaba, PhD FRCP,  Royal Papworth Hospital and University of Cambridge

Let's hear from our patient advocates

I was diagnosed 15 years ago. I completed the survey as it will help to improve the care that PH patients experience from across the world.
Tess Patient, United Kingdom
I am so delighted that we now have a global survey which gives us meaningful and detailed insights into how PH is affecting patients and their families around the globe – a good look at the patients' perspective which will help improve understandings of how to care for patients across the world. Thank you so much to all the patients and their families for taking the time and care to participate.
Gabi Lowe Founder and Director of The Jenna Lowe Trust, South Africa
Conducting a worldwide survey on the effects of pulmonary hypertension on patients' daily lives and mental well-being is a crucial step towards shedding light on their struggles, needs and aspirations, fostering understanding and empathy and driving initiatives for better care and support.
Pisana Ferrari Patient advocate, Italy

Frequently asked questions

Who can complete the survey?

The survey is designed for patients who live with all types of pulmonary hypertension but can be completed by a family member or caregiver on the behalf of the patient. If the patient is below 16 years of age, the survey must be completed by a parent or guardian. Patients completing this questionnaire will be instrumental in directing future research to improve care and outcomes for patients globally.


Who created the survey?

The PH GPS has been designed to help improve global understandings of how pulmonary hypertension affects the lives of patients and in what ways pulmonary hypertension care needs to be improved. It has been written by a multidisciplinary panel of pulmonary hypertension specialists and patient group advocates from the Pulmonary Hypertension Associations of Europe, United States, United Kingdom and South Africa. It was coordinated by the Pulmonary Vascular Research Institute's (PVRI) Patient Engagement & Empowerment Workstream and endorsed by ERN-Lung.


How will my data be used?

All data from the PH GPS will be anonymised when used in academic publication and presentation. Please see the Data Privacy Notices on the right hand side of this page for more information.


How long will the survey take me to complete? 

This survey consists of three sections with each section taking approximately 10 minutes to complete and we would be grateful if you can finish all three parts.


If you have any questions please contact PVRI at admin@pvrinsititute.org

Thank you for contributing to our vision to improve worldwide patient experience.

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