10 Calls to Action for improving care for adult patients living with pulmonary hypertension

The Pulmonary Hypertension Global Patient Survey (PHGPS), the largest survey to date to explore the perspectives of patients with PH at a global scale run by the Pulmonary Vascular Research Institute (PVRI), has released its initial findings from its adult cohort of 3,329 patients across 90 countries living with pulmonary hypertension (PH).

The ‘The Pulmonary Hypertension Global Patient Survey: understanding the experiences and perspectives of patients’ paper published in ERJ Open Research focuses on the findings from the adult cohort, across the themes of diagnostics, treatment, support, quality of life, digital health and clinical research participation. The paper highlights that most PAH patients reported a diagnosis within 12 months of symptom onset.

After a year-long analysis and interval findings presented and discussed at international conferences, the survey data identified 10 global priorities for improving care for adult patients living with pulmonary hypertension. These 10 calls to action aim to enhance equitable access to care and research opportunities, particularly across geographical disparities.

10 Calls to Action

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

The question now for all of us, whether you are a pulmonary hypertension patient, caregiver, physician, researcher, clinician or pharmaceutical company, is ‘What do they mean for me?’ We need to work together as one pulmonary hypertension community to improve patient care globally.