The Pulmonary Hypertension Global Patient Survey (PH GPS): Quality of Life

<bold>Background:</bold> Patients’ experiences of living with pulmonary hypertension (PH) is likely to vary across PH groups. <bold>Aims:</bold> To conduct the first global survey to understand the impact of PH on patients’ quality of life (QoL). <bold>Methods:</bold> PH GPS was drafted via an iterative consensus-building process by a multi-disciplinary panel including patient advocates. Overseen by PVRI and endorsed by ERN-Lung. Questions explored a number of themes including a spectrum of QoL metrics. It was translated then beta-tested by patient and disseminated by PH patient organisations via traditional/social media. <bold>Results:</bold> There were 3329 adult survey responders across 22 languages and 88 countries. Overall, the biggest impact of PH was seen in the ability to undertake exercise (61%) followed by domestic chores (46%), with females affected more than males. Exercise capacity in the youngest age groups (18 – 30 years) was most affected, although overall those aged 41 – 50 years reported the greatest impact of PH on QoL. Across PH groups, those with Group 3 PH, Pulmonary Veno-Occlusive Disease or Group 4 PH not undergoing mechanical intervention had the worst QoL. 47% reported any side effect from PH medication. Side effects were highest in those aged 31 – 40 years, as were emotional symptoms; both of which improved with age. <bold>Conclusions:</bold> PH has a significant and underappreciated impact on patients’ quality of life and psychological state. Certain patient groups are more affected than others which requires further exploration.