New research to understand life with PH

Posted on January 4th 2023

A new survey by the PHA UK aims to uncover what it really means to live with pulmonary hypertension today.

Five years ago, we conducted the largest ever survey into the lived experiences of pulmonary hypertension in the UK – and it is now time to see what’s changed.

The impact of that survey has been huge. Since 2017, the findings have been used to inform and underpin our work as a charity, secure access to new treatments, and influence government decisions.

They have been used in our collaborative work with NHS commissioners and specialist centres, and they have influenced the National Audit of PH, service provision, and much more.

It’s vital that we understand what it really means to live with PH now, so we can compare the findings and use new evidence to influence change. This is especially important as we move out of the pandemic and work to secure access to the best treatments and services for this disease.

We are inviting adults with pulmonary hypertension, living in the UK, to complete this survey before 31st January 2023.

We plan to conduct a separate survey around children and PH in the coming months.