This real-world study aimed to discover which PH symptoms affect people most and how lives are impacted.
While patients in the UK have access to some of the world’s leading treatments, many still face significant challenges in their daily lives. The research aimed to uncover the specific nature of these difficulties and provide a deeper understanding – drawing directly from patient-reported experiences.
Surveys were completed by 232 patients and 35 caregivers in the Spring of 2025, and the key findings include:
The report below offers a unique perspective on the patient-defined symptom burden of pulmonary hypertension. Through rich, diverse, and deeply personal responses, it reveals the profound impact of PH on individuals and those around them.
“My symptoms are my life… If I didn’t have them, it would be so different. They’re everything.”
“I find breathlessness stops me doing as much as other people… I have to take a lot of extra precautions with PH.”
“The fatigue comes over you like a blanket… It’s all-encompassing and you literally cannot move.”
“Losing my independence has been hard to cope with… The symptoms have had a big impact.”
