PHA UK led research

We are dedicated to improving life for people affected by pulmonary hypertension, and our own research is underpinned by this commitment. Capturing the experiences and opinions of those in the PH community is vital to enable us to carry out campaigns and shape resources, and we are grateful to everyone who completes our surveys, or lends their voice in other ways to our research.

Please scroll down to find out more about our current and previous research.

Understanding attitudes towards the clinical frailty score

We’re exploring whether this could be a potential new way of measuring the impact of PH – and we need patients and caregivers to share their thoughts.

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Lifting the lid on nutrition and PH

Our first-of-its kind survey generated rich findings that are helping us to support people with PH to enjoy a better quality of life. (Results published March 2024)

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Breathless, not voiceless: What it means to live with PH today

The UK’s largest ever study into the lived experiences of pulmonary hypertension. (Results published November 2023)

Read the report

Your data, your thoughts

This research project aimed to find out how the PH community feels about their health records being accessed by researchers for a variety of different purposes.

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The cost of living crisis and PH

This research has demonstrated a clear correlation between the cost-of-living crisis and declining health in the PH community. It’s vital that there is change. 

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‘My pandemic’

This unique project has used personal stories to understand more about experiences of the COVID-19 crisis within the PH community.

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1000 voices: Living through the pandemic with PH

In the summer of 2021, we asked for the experiences of patients – and their loved ones – to help us understand the full impact of the COVID-19 pandemic on the UK’s PH community.

Over 1000 responses were received.

Access the findings here

Shielded voices

This research was conducted in the summer of 2020 and aimed to capture the lived experiences of people with PH during the first three months of the COVID-19 pandemic.

Access the findings here

The true emotional impact of PH

This study aimed to understand more about the issues revealed in our Living with PH survey, uncovering the significant impact of pulmonary hypertension on emotional and mental wellbeing.

Access the findings here

The true financial impact of PH

Inspired by the results of our major Living with PH survey, this research delved deeper into the financial impact of pulmonary hypertension.

The study looked at changes in income and employment, the benefits system, insurance, and the hidden costs of PH.

Access the findings here

What it means to live with PH today

This major survey, conducted in 2016, is the largest study into the lived experience of pulmonary hypertension.

The research looked at areas including time to diagnosis, quality of life, financial impact and treatment, and the results have underpinned the strategic direction of the PHA UK ever since.

Access the findings here

Palliative care and PAH

We funded an important PhD study that researched the role of palliative care in pulmonary arterial hypertension, addressing barriers and ways to overcome them. The report will be available soon, and we are currently building on these findings to help more people access this vital support.

Specialist rehabilitation in PH

We have provided funding for specialist physiotherapy roles within two specialist PH treatment centres. These roles combined research into rehabilitation with the day-to-day support of patients, and the findings are helping us secure equity of access across the UK.