The Pulmonary Vascular Research Institute has released 10 global priorities for improving patient care after analyzing results of its Pulmonary Hypertension Global Patient Survey. The findings are based on the responses of 3,329 adults with PH from 90 countries. Survey respondents also included 135 pediatric patients but the analysis focused only on adult responses.

The 10 calls to action aim to improve access to care and research opportunities, particularly in areas of geographical disparities:

1. Patients should be investigated rapidly to reduce the time to PH diagnosis.
2. Patients should have access to a specialist PH center with diagnostics and therapeutics including genetic testing, parenteral prostacyclins and mechanical interventions for management of CTEPH.
3. Patient-reported outcome measures 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. Health care professionals should encourage patients to access PH associations for education and other resources.
6. Patients should be assisted in applying for employment adjustments or disability support.
7. Patients should be empowered to engage with digital and remote health care, where appropriate.
8. Patients with groups 2, 3 and 5 PH should be better represented in research and specialist clinical care.
9. Patients should be offered the opportunity to participate in clinical research trials and registries that ideally were co-designed with patients.
10. Patients and their caregivers should be invited to participate in the PH Global Patient Survey 2 to evaluate progress over time and further widen representation geographically and from groups 2 and 3.

About the participants

More than half the respondents (59.6%) reported having Group 1 PH. Groups 2 (10.7%) and 3 (7.2%) PH were the least represented.

The majority of participants were from the Global North, including 21.2% from the U.S., 7.7% from Argentina, 6.7% from Germany, 4.6% from the Netherlands, 4.1% from Ukraine, 3.7% from Spain, 3.5% from Poland, 3.5% from the UK and 2.9% from India.

The survey was available in 22 languages, but most participants responded in English (33.1%) and Spanish (25.4%).

The average age of participants was 52.2, and the majority (81.7%) were female. Most respondents with pulmonary arterial hypertension said they were diagnosed within a year of their symptoms starting.

Other notable findings were that 58% of respondents said they were experienced in self-monitoring their health; 20.6% have completed patient-reported outcome measures; and 19.1% have participated in research. Significantly, 72.2% said they would be willing to participate in research studies if invited.

The Pulmonary Hypertension Global Patient Survey is the largest survey to explore the perspectives of people with PH throughout the world.