Pulmonary Hypertension Global Patient Survey (PHGPS)

Thank you to the pulmonary hypertension community for their participation and contributions to the PHGPS. Phase 1 received a tremendous response, with almost 4,000 patients and carers across 90 countries! 

What is the PHGPS?

Pulmonary Hypertension (PH) is caused by a range of conditions affecting people of all ages in diverse ways, with differing treatment options and prognoses. Patients’ experience of living with PH is likely to vary considerably within, and between, countries, but the extent of this variation is unknown. The first global patient survey (PHGPS) aims to understand patients’ perspectives and experiences to drive healthcare improvements.

The survey was first launched in October 2023, and on 27 September 2024, phase 1 of the survey closed.  The PHGPS was drafted via an iterative consensus-building process by a multi-disciplinary panel of patients, physicians, nurses, researchers, industry partners, and advocates from Pulmonary Hypertension Associations (PHAs). Themes included time to diagnosis, treatment, quality of life, research participation and digital health. It contained over 100 questions inclusive of PH Groups 1 to 5 through 3 parallel responder streams of adult patients, carers/relatives of adult patients, parents/guardians of paediatric patients.

10 Calls to Action for Improving Pulmonary Hypertension Care Globally

1. Patients should be investigated rapidly to reduce the time to PH diagnosis
2. Patients should have access to a specialist PH centre with diagnostics and therapeutics including genetic testing, parenteral prostacyclins and mechanical interventions for management of CTEPH
3. Patient Reported Outcomes Measures (PROMs) should be used to evaluate quality of life and guide holistic care, including psychological and rehabilitative services
4. Patients should be empowered to engage in shared-decision making in partnership with their clinicians, including managing side effects
5. Patients with PH should be encouraged to access PH associations by their healthcare professionals for education and other resources
6. Patients with PH should be assisted in applying to make adjustments to employment or applying for disability support
7. Patients with PH should be empowered to engage with digital and remote healthcare, where appropriate
8. Patients with Groups 2, 3 and 5 PH should be better represented in research and specialist clinical care
9. Patients with PH should be offered the opportunity to participate in clinical research trials and registries, that have ideally been co-designed with patients
10. Patients and their carers should be invited to participate in PHGPS-2 to evaluate progress over time and further widen representation geographically and in Groups 2 and 3

Interested in accessing global data on PH patient experience? 

Almost 4,000 patients and carers across 90 countries completed Phase 1 of our PH Global Patient Survey (PHGPS). Questions across all PH groups included diagnostic tests & timelines, genetic testing, treatments, financial burdens, hospital visits, research participation, quality of life, telemedicine, patient-reported outcome measures, and self-monitoring with digital technology. The findings have the potential to improve patient care, guide future research and help us address unmet needs.

Access the data

Posters

• PVRI 2025: Results from the PHGPS
• ERS 2024: PHGPS overview and results

What have patients told us?

"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

Thank you

"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

Thank you to the panel of PH specialists and patient group advocates from Pulmonary Hypertension Associations of Europe, United States, United Kingdom and South Africa who helped write the survey. It was coordinated by PVRI’s Patient Engagement & Empowerment Workstream and endorsed by ERN-Lung.

If you have any questions, please contact us.