Here at the PHA UK we’re working with medics and researchers to ensure patients are at the centre of chronic thromboembolic pulmonary hypertension (CTEPH) service development.
CTEPH is the only type of PH that may be cured – through pioneering surgery called a pulmonary endarterectomy (PEA) or sophisticated procedures called balloon pulmonary angioplasty (BPA). It can also be treated, although not cured, via medication. Some patients may receive a combination of these treatments.
Whilst this treatment landscape has progressed, with many options now available, there has been limited patient and carer engagement on preferences – and this needs to change.
This collaborative project aims to put patients at the very centre of the decision process, with the aim of helping to shape UK NHS service development over the next decade and beyond.
We want to know what matters to you and your loved ones when it comes to making choices about treatment, and what influences those decisions. We want to make sure your voices are heard.
This study project is for UK-based patients who either have CTEPH, or who have had it previously (and have undergone treatment).
We are also interested in hearing from caregivers and loved ones, as we know that this disease affects the people around the patient too.
As part of this project, you will be invited to share your thoughts and experiences via surveys and focus groups. No commitment is needed; you can choose which opportunities to engage with through the duration of the study.
We will never pass your contact details onto the medics or researchers involved in this study – or anyone else. You can view our full privacy policy here.
