Pulmonary Hypertension Global Patient Survey (PH GPS)
Thank you to the pulmonary hypertension community for their participation and contributions to the PH GPS. Phase 1 received a tremendous response, with almost 4,000 patients and carers across 85 countries!
What is the PH GPS?
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 (PH GPS), co-designed and delivered through an international network, will help improve patient outcomes.
The PH GPS was designed to understand patients’ lived experience to better inform clinical guidelines & research priorities. The survey was first launched in October 2023, and on 27 September 2024, phase 1 of the survey closed. The PH GPS 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
The PH GPS was translated, beta-tested and rolled out in 24 languages. The data is being analysed via mixed-methods – quantitative descriptive statistics (by region; by PH group) and qualitative thematic analysis. There are almost 400,000 data points to be studied, so the analysis process will take some time and involve careful review. Papers are currently being prepared for publication. This new data will expand our knowledge and understanding of PH symptoms, treatments, and patients’ quality of life worldwide. The findings have the potential to improve patient care, guide future research and help us address unmet needs. They could play a key role in shaping healthcare policies and enhancing clinical practices, ultimately improving outcomes for diverse patient populations.
What have we learnt so far?
Early data analysis of the time to diagnosis, treatment, quality of life, research participation and digital health shows:
- 57% of adult Group 1 patients were diagnosed within 12 months
- 34% of adults with IPAH/HPAH have had genetic testing
- 91% of all adult PH patients report at least some sleep disturbance
- 21% of adult patients have completed a Patient Reported Outcome Measure
- 47% of adult patients report side effects from PH meds in last 6 months
- 74% of all adult PH patients have had negatively impacted employment
PH GPS an overview and results poster presented at ERS 2024
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
Frequently asked questions
The survey 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 PH GPS 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.
To make a data request, please see our Data Access Policy.
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.
Interested in accessing global data on PH patient experience?
Almost 4,000 patients and carers across 85 countries completed Phase 1 of our PH Global Patient Survey (PH GPS). 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.
“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
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.