Global survey reveals gaps and hope in pulmonary hypertension care 

Background

Pulmonary hypertension (PH) is a condition that affects your lungs and heart, caused by high blood pressure in the lungs which makes it harder for the heart to pump blood through the lungs properly.

PH can occur on its own, but it is more common in people who have an existing heart or lung condition. This can make it more difficult to diagnose and treat.

What did the study look at?

The study aimed to get a better understanding of patient experiences of PH around the world. A total of 3,329 people from over 90 countries took part in this study, making it the largest global survey to date of people living with PH.

This survey asked about diagnosis, treatment and quality of life to learn directly from patients how PH affects them.

What do the results show?

The study highlighted important insights about PH care and its impact:

• Access to care varies by region: People in Europe and North America had access to tests and specialist care. Those in other parts of the world often had fewer resources.
• Diagnosis and care: Most participants had positive experiences. About 8 in 10 were under the care of a PH specialist and many were diagnosed within a year of symptoms starting.
• Travel and remote care: Some people had to travel more than 400km to see a specialist. Many were open to using remote healthcare options, with about 6 in 10 already monitoring their health using smartwatches and similar devices.
• Quality of life: PH had a big impact on daily life. More than half of respondents were registered as disabled, nearly 3 in 4 said PH affected their work or education, and 2 in 5 felt physically inactive.
• Patient-reported outcome measures (PROMs): These tools help patients share their health experiences directly with care teams. However, only 1 in 5 had completed a PROM and just 1 in 14 felt that the results of their PROM helped improve their treatment.

Most people who took part were adults, with an average age of 52, and about 8 in 10 were women. Many were from Argentina, Mexico and the USA. Because of this, the results may not fully reflect experiences in all regions. The researchers want future surveys to include more diverse groups to better represent people living with PH worldwide.

Why is this important?

This survey gives valuable insight into what is working well in PH care and where improvements are needed.

It shows that quality of life and equal access to care are a priority and patients want to be more involved in their treatment and research.

The findings highlight the need for more personalised and flexible care and for better use of patient-reported outcomes to improve support for people living with PH worldwide.

What happens next?

Following this global survey, experts and patient organisations have outlined 10 key priorities to improve care for people living with pulmonary hypertension worldwide. These priorities focus on reducing delays in diagnosis, improving access to specialist care, better use of patient-reported outcome measures, supporting patient involvement, and addressing inequalities in care and research.

You can read more about these priorities in an editorial published in Pulmonary Circulation.

Read the original research paper: The Pulmonary Hypertension Global Patient Survey: understanding the experiences and perspectives of patients