The Pulmonary Hypertension Global Patient Survey (PH GPS): an overview and results

<bold>Background:</bold> Patients’ experience of living with pulmonary hypertension (PH) is likely to vary within & between countries. <bold>Aim:</bold> To conduct the first global survey to understand patients’ perspectives of living with PH. <bold>Methods:</bold> PH GPS was drafted via an iterative consensus-building process by a multi-disciplinary panel: physicians, nurses, researchers, patients & advocates from Pulmonary Hypertension Associations (PHAs). Overseen by PVRI & endorsed by ERN-Lung. Themes include diagnosis, treatment, quality of life, research participation & digital health. It was translated then beta-tested by patients. The online survey had 3 parallel streams: adult patients, carers/relatives of adult patients & parents/guardians of paediatric patients, with different arms tailored to specific PH groups. Disseminated by PHAs via traditional/social media. <bold>Results:</bold> In the first 2 months, there were 3366 responders (3193 adults: 82.3% female, mean age 51.8y, 57% Group 1 PAH, 79% survey completion rate) with ~100 data points each, from 5 continents, 88 countries & 17 languages. Figure1 is an example of early novel results of the global PH patient community’s participation in clinical trials. Data is pending from 7 more languages. <bold>Conclusions:</bold> The high global response rate & depth of PH GPS data allow novel & important insights to be made which will inform international guidelines, research priorities & health policy, to improve care & outcomes worldwide. <fig><object-id>erj;64/suppl_68/PA2501/F1</object-id><object-id>F1</object-id><object-id>F1</object-id><graphic></graphic></fig>