Pulmonary Hypertension Global Patient Survey (PH GPS)

PH GPS banner

The PH GPS is the first global survey to assess the impacts of PH 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. If possible, please complete the survey in your native language and do not complete it more than once. 

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

If you have any questions, please contact us. 

 

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

Frequently asked questions

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. 

The PH GPS has been designed to help improve global understandings of how PH affects the lives of patients and in what ways PH care needs to be improved. It has been written by a multidisciplinary panel of PH 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.

All data from the PH GPS will be anonymised when used in academic publication and presentation. Please see the Data Privacy Notices for more information. 

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. 

Find out more...

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Almost 4,000 patients and carers in over 85 countries have completed our PH GPS. To make a data request, please use our Data Access Policy.

Data Access Policy
Data Privacy Notices

To find out more about how your data will be used, please see the privacy notices. 

Dr Joseph Newman

Are you a clinician who can reach PH patients? 

The PH GPS is a groundbreaking initiative aiming to evaluate the effects and real-life experiences of patients living with PH worldwide. We invite you to help us reach those living with or caring for someone with PH, regardless of where they live and the language they speak. "To make this happen, we need your help to share this survey with patients and carers." Dr. Joseph Newman, University of Cambridge

To help you share the survey, download our Communications Pack with an introduction to the survey, promotional copy, social media images, flyers, and more.

PH GPS Communications Pack

“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