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Study findings, released on PH Day UK, offer a unique perspective on the patient-defined symptom burden of pulmonary hypertension.

See the report

While those living with PH in the United Kingdom have access to some of the world’s leading treatments, many still face significant challenges in their daily lives.

Our research aimed to uncover the specific nature of these difficulties and provide a deeper understanding of the disease - drawing directly from patient-reported experiences.

Surveys were completed by 232 patients and 35 caregivers, and the key findings show:

• Fatigue and tiredness are as burdensome as breathlessness;
• Experiencing multiple symptoms (‘symptom clusters’) amplifies distress, especially when they persist and interact;
• Caregiver insights reinforce and validate the patient-reported impact of symptoms.

The findings of this study will be used to elevate the voices that too often go unheard.

Further analysis of the results is taking place, including mapping against other studies and the identification of themes.

These illuminating findings will be shared with healthcare teams, service providers, commissioners, and the pharmaceutical industry too. Opportunities will also be sought to present them internationally.

They will be used to help guide the PHA UK to provide support to the pulmonary hypertension community in the most effective ways. They will add to the evidence base used in drug access work, highlighting why more effective treatments are needed.

Dr Iain Armstrong, Chair of the PHA UK, said:

“This is a really powerful piece of research. Drawing on lived experience, patients described fatigue, breathlessness, and palpitations not only as physical symptoms, but as forces that reshape daily life, erode confidence, and fracture identity. The emotional toll was palpable in the comments provided within the survey responses.

The findings of this research show the vital importance of measuring the symptom burden of PH – and the specialist services in the UK need to listen. If we don’t measure symptom burden, we can’t see it. If we can’t see it, we miss it. And if we miss it, we fail to respond.

Symptom burden is where change is felt and where suffering is named – and it is where care must respond.”

Watch this short film to hear from four people living with the impact of PH symptoms: