A portrait of PH with lung disease: Understanding lived experiences

Do you have pulmonary hypertension with lung disease?

Please use the form at the bottom of the page to tell us if you’d like to share your experiences…

Pulmonary hypertension (PH) can develop as a complication of various lung diseases, and our new research project aims to understand the unique experiences of those impacted by both PH and chronic lung diseases.

These lung diseases may include – but are not limited to – pulmonary fibrosis, sarcoidosis, and chronic obstructive pulmonary diseases (COPD) such as emphysema (please note we are not including asthma in this group for the purpose of this project).

We would like to talk to people who live in the UK with both PH and lung disease to hear about their diagnosis and treatment journey, the impact of the conditions, and how they cope. We would also like to speak to loved ones / caregivers, to understand their perspectives too.

The insights that will be gained through this project will be essential for:

Understanding treatment effectiveness from the patient perspective
Supporting healthcare providers in delivering patient-centred care
Informing commissioning discussions and decisions
Guiding drug therapies and other intervention development

Please use the form at the bottom of this page to tell us if you’d be happy to be interviewed for this study, and you will be contacted to arrange a date and time.

The discussion will take place either on the phone or via Zoom (depending on your preference) and it will last for around half an hour. It will be with Mary Ferguson, who produces our member magazine and who has been part of the PHA UK team for nine years.

In addition to the study, we would also like to include a selection of the experiences gathered on our website and in our member magazine, to help others with PH. You do not have to agree to this, and you may remain anonymous if you wish.

Thank you for considering being part of this important project – we really appreciate it! If you have any questions about the discussions, please email mary@phauk.org.

Ready to put yourself forward? Please complete the form below and Mary will be in touch…

I’d like to tell you my experiences of PH and lung disease

Your name(Required)

Your telephone number (mobile preferred)(Required)

Your email address(Required)

Which of these describes you best?(Required)

I have PH and lung disease

My relative, partner or friend has PH and lung disease

Other

Whereabouts in the UK do you live?(Required)

England

Scotland

Wales

Northern Ireland

What type of lung disease do you / your loved one live with?(Required)

In what year were you / your loved one diagnosed with PH?(Required)

How would you prefer your chat to take place?

On the phone

Via Zoom

Do you have any comments, or is there anything you would like to tell us?

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