Understanding what information materials are needed for people who have PH with congenital heart disease

Understanding adult congenital heart disease and pulmonary hypertension information needs

The PHA UK has teamed up with a group of specialist doctors to develop new information resources to help people living with pulmonary hypertension (PH) associated with congenital heart disease (CHD).

Some people born with heart problems (known as congenital heart disease) go on to develop PH, and at present, there are limited information resources available that are specifically aimed at these individuals.

At the end of 2023, we conducted a survey amongst both patients and caregivers to identify knowledge gaps and understand what is needed from new resources.

The questionnaire was promoted both online and within treatment centres, and it was completed by 177 patients and 33 caregivers. You can access the results, which were published in April 2024, below.

The key findings from our survey for patients

The key findings from our survey for caregivers

The next steps…

April 2024

Our findings show there is a clear unmet need for information that focuses on the combined issues of PH and CHD. We’ll be gathering more insight to help us shape these resources by holding an online focus group with patients and caregivers, ensuring the materials we produce fully meet the needs of those affected by these conditions. 

We are grateful to everyone who completed our survey.

This work is being carried out by the PHA UK in collaboration with the CHAMPION group, which stands for Congenital Heart disease And pulMonary arterial hyPertension: Improving Outcomes through education and research Networks.

The group is made up of clinicians specialising in the management of pulmonary hypertension (PH) and of congenital heart disease (CHD from a number of specialist centres in the UK. As the name suggests, their aim is to help improve the management of patients with PH due to CHD through research and education.