Pulmonary Hypertension Global Patient Survey (PHGPS)
The Pulmonary Hypertension Global Patient Survey (PHGPS) is the largest international survey capturing the experiences of people living with pulmonary hypertension (PH). Nearly 4,000 patients and carers from 90 countries took part in phase 1, helping us to build a clearer picture of how PH affects people’s lives, care, treatment, wellbeing and access to support around the world.
Launched in October 2023, PHGPS brings together patient perspectives across all PH groups to identify unmet needs, highlight global variation in care, and support research, advocacy and service improvement.
The PHGPS exists because people living with PH are the experts in their own experience.
By making their insights easier to understand and share, we aim to empower the global PH community to support better research, better care and stronger advocacy for people affected by PH worldwide.
PHGPS at a glance
- Nearly 4,000 patients and carers took part in Phase 1
- Respondents came from 90 countries
- The survey covers all PH groups
- Topics include diagnosis, treatment, quality of life, financial impact, research, digital health and patient support
- Findings have informed 10 global calls to action to improve PH care
- Users can now explore key findings through the new PHGPS Dashboard
Explore the PHGPS Dashboard
Explore insights and discover what the PHGPS reveals about the lived experience, needs and priorities of people affected by PH worldwide. The dashboard provides an accessible overview of key survey findings. Users can explore the data by region, diagnosis classification, respondent type and gender, helping clinicians, researchers, patient organisations, patient advocates, and decision-makers identify gaps, recognise shared challenges and work together to improve outcomes for people living with PH.
Please note: the dashboard is optimised for viewing on a laptop or desktop computer, rather than on a mobile phone.
What can we learn from the PHGPS?
The PHGPS follows the patient journey from first symptoms and diagnosis through to treatment, daily life, research participation and long-term support. The survey helps the wider PH community understand where care is working well, where people face barriers, and where change is most urgently needed.
The findings can help to:
- identify delays and gaps in diagnosis
- highlight differences in access to specialist care and treatment
- understand the emotional, financial and practical impact of PH
- strengthen patient-centred research and clinical trial design
- support advocacy for more equitable care worldwide.
Survey topics include diagnosis, treatment, healthcare access, quality of life, financial impact, work and education, family and carer support, patient associations, clinical research, telemedicine, digital tools and patient-reported outcome measures. The PHGPS findings are being shared through academic publications, congress presentations, posters and other outputs to support wider learning across the PH community. These outputs help translate patient insights into evidence that can inform research priorities, clinical practice, advocacy and service improvement. They also support our commitment to ensuring that people living with PH are represented in global conversations about the future of care.
- Bunclark, K., Newman J., Ghani, H., Munagala,S., Otter, E., et al. (2026) 'The Pulmonary Hypertension Global Patient Survey: Groups 2 and 3', Pulmonary Circulation, 16(1), e70256
- Bunclark, K., Newman J., Ghani, H., Munagala,S., Otter, E., et al. (2026) 'The Pulmonary Hypertension Global Patient Survey: Physical and Psychosocial Impacts on Health-Related Quality of Life'. Pulmonary Circulation, 16(1), e70264
- Quyam, S., Drumm, S., Munagala, S., Bunclark, K., Fischer, G., et al. (2026) 'The Pulmonary Hypertension Global Patient Survey: Understanding the Invisible Burden of Paediatric Pulmonary Hypertension'. Pulmonary Circulation, 16(1), e70269
- Newman, J., Ghani, H., Munagala, S., Otter, E., Fischer, G., et al. (2025) 'Pulmonary Hypertension Global Patient Survey: A Call to Action 2025'. Pulmonary Circulation, 15(3), e70130
- Newman, J., Ghani, H., Munagala, S., Otter, E., Fischer, G., et al. (2025) 'The PHGPS: Understanding the experiences and perspectives of patients' ERJ Open Research, 11(6), 00297-2025
- Newman, J., Ghani, H., Fischer, G., Howard L., Kurzyna, M., et al. (2025) The Importance of Pulmonary Hypertension Associations: Results from the Pulmonary Hypertension Global Patient Survey (PH GPS) PVRI 2025
- Newman, J., Munagala, S., Fay, M., Fischer, G., Granato, M., et al. (2024) 'PHGPS overview and results'. ERS Congress 2024
Access the full data set
If you’re interested in exploring the dataset in depth, use the link below to read more about the insights from PHGPS, see the data access policy and procedure and take the next steps to request the data.
Find out more about requesting the data
10 Calls to Action
The PHGPS has helped identify 10 global priorities for improving care for adults living with PH. These calls to action, published in a Letter to the Editor in Pulmonary Circulation in July 2025, focus on earlier diagnosis, specialist care, quality of life, shared decision-making, access to patient associations, employment support, digital health, research inclusion and participation in future surveys.
The calls to action are designed to support practical change across research, clinical care, advocacy and policy. They reflect the priorities shared by people living with PH and provide a framework for the global PH community to work together to improve outcomes.
- Patients should be investigated rapidly to reduce the time to PH diagnosis
- 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
- Patient Reported Outcomes Measures (PROMs) should be used to evaluate quality of life and guide holistic care, including psychological and rehabilitative services
- Patients should be empowered to engage in shared-decision making in partnership with their clinicians, including managing side effects
- Patients with PH should be encouraged to access PH associations by their healthcare professionals for education and other resources
- Patients with PH should be assisted in applying to make adjustments to employment or applying for disability support
- Patients with PH should be empowered to engage with digital and remote healthcare, where appropriate
- Patients with Groups 2, 3 and 5 PH should be better represented in research and specialist clinical care
- Patients with PH should be offered the opportunity to participate in clinical research trials and registries, that have ideally been co-designed with patients
- 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
What have patients told us?
People living with PH are central to PHGPS. Their experiences, priorities and insights help the wider PH community better understand the realities of diagnosis, treatment, daily life and long-term support. By listening to patients and carers, the PHGPS supports a more inclusive and meaningful approach to research, care and advocacy. It helps ensure that future decisions are shaped not only by clinical data, but also by the lived experience of those most affected.
"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
Get involved
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. Since its launch, a PHGPS Task Force has been established to focus on
- data sharing
- succession planning
- enhancing patient engagement
- launching PHGPS Phase 2
The Task Force welcomes collaboration with patients, carers, clinicians, researchers, patient organisations, advocates, partners and decision-makers who want to use PHGPS insights to improve outcomes for people living with pulmonary hypertension.
Get in touch with the PHGPS Task Force.
Frequently asked questions
PHGPS is the Pulmonary Hypertension Global Patient Survey. It is a global survey designed to capture the experiences, needs and priorities of people living with pulmonary hypertension and their carers.
PH can affect every part of a person’s life, from physical symptoms and treatment decisions to emotional wellbeing, work, family life and financial security. Yet many people living with PH experience delays in diagnosis, limited access to specialist care, and significant differences in support depending on where they live.
PHGPS helps make these experiences visible. By gathering patient and carer perspectives from around the world, the survey provides evidence that can support more patient-centred research, stronger advocacy and better-informed decisions about PH care.
The findings are intended to help the global PH community understand where care is working well, where people face barriers, and where change is most urgently needed.
Nearly 4,000 patients and carers from 90 countries took part in Phase 1 of the survey. It was designed for patients who live with all types of pulmonary hypertension but could be completed by a family member or caregiver on behalf of the patient. If the patient was below 16 years of age, the survey was completed by a parent or guardian. Where possible, the survey was completed in the respondent's native language. All data is anonymised for academic publication an presentation.
The survey covers a wide range of topics, including diagnosis, treatment, healthcare access, quality of life, financial impact, work and education, family and carer support, patient associations, clinical research, telemedicine, digital tools and patient-reported outcome measures.
The PHGPS was 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 was 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.
The PHGPS Dashboard is an interactive tool that provides an accessible overview of selected survey findings. Users can explore key findings by region, diagnosis classification, respondent type and gender.
The dashboard is intended for clinicians, researchers, patient organisations, patient advocates, decision-makers and anyone interested in understanding the lived experience, needs and priorities of people affected by PH worldwide.
The dashboard is optimised for viewing on a laptop or desktop computer, rather than on a mobile phone.
Researchers, collaborators and partners can request access to the full dataset through PVRI’s data access process. Access is subject to review and approval.
Phase 2 is being planned for launch in 2027. If you are interested in finding out more, contact our PHGPS Task Force.
Want to find out more about PVRI without becoming a member?
Are you a healthcare professional, patient or carer? Join our community as a Friend of PVRI and receive PVRi Pulse - our monthly newsletter that keeps you up to date with our latest news and developments.