In October 2023, the Pulmonary Vascular Research Institute launched the Pulmonary Hypertension Global Patient Survey (PHGPS) to better understand the reality of what it is like to live with the condition worldwide. Almost 4,000 patients and carers from 90 countries took part in the survey and shared their experiences, which makes the PHGPS one of the most comprehensive global surveys of the pulmonary hypertension patient experience ever carried out.
PHGPS papers
Together with the Workstreams and Task Forces, the PVRI have published three peer-reviewed papers in Pulmonary Circulation:
* The PHGPS: Physical and Psychosocial Impacts on Health-Related QoL
* The PHGPS: Groups 2 and 3 of the World Health Organisation classificaltion
* The PHGPS: Understanding the Invisible Burden of Paediatric pulmonary hypertension
Together, these papers help shed a light on the comon theme: the invisible impact of pulmonary hypertension, the daily physical, emotional, and practical challenges experienced by patients and families that are not always reflected in clinical tests.
Key insights
Physical and Psychosocial Impacts on Health-Related QoL
*79% live with physical limitations, including 42% experiencing poor sleep quality
*Women of childbearing age experience a significant physical and psychological burden, with 54% of female respondents worrying about pregnancy
*36% feeling misunderstood, often wanting to discuss emotional symptoms but experiencing a lack of empathy
WHO Group 2 pulmonary hypertension
*83% of those in work say pulmonary hypertension has affected their work
*63% struggle with walking short distances or climbing stairs
*37% experience feelings of restlessness
WHO Group 3 pulmonary hypertension
*88% of those in work say pulmonary hypertension has affected their work
*66% struggle with household chores
*37% experience feelings of frustration
The PHGPS: Understanding the Invisible Burden of Paediatric pulmonary hypertension
*41% waited more than six months for diagnosis, with only 8% of caregivers having heard of pulmonary hypertension
*35% travel more than two hours for appointments, with 28% receiving no cost reimbursement
*40% of caregivers provide constant care, facing significant employment consequences, including leaving work altogether, reduced hours, or career changes
Share the insights
To help share these papers, the Pulmonary Vascular Research Institute has put together a resource pack with:
*Patient email templates
*Social media graphics and copy
*Editable Canva flyers
This pack promotes the “How to Empower Yourself & Others series”, created to help patients, carers, and families feel more informed, confident, and empowered.