Abstract
Background: Pulmonary Hypertension Association UK (PHA-UK) is the only charity in the UK especially for people affected by pulmonary hypertension. Surveys of patients’ experiences have been conducted by PAH-UK in 2007, 2010 and more recently in 2016. We now report the 2016 survey and provide comparisons with previous results.
Method: A survey regarding diagnosis, management, quality-of-life and treatment was sent to PHA-UK members and to patients on PH-specific targeted therapy.
Results: 563 responses were received. Participant current age was 5917 years (mean±sd) and 53±19 years at diagnosis. 70% were female. 46% of patients had symptoms for >6 months before going to see a doctor. 22% were seen by >4 doctors before diagnosis. Time from first symptoms to diagnosis was >1 year in ~50% as was found in previous surveys (Figure). 32% were admitted to hospital as an emergency. 90% thought it was better to travel to a Specialist PH Centre rather than to be under the care of a non-PH specialist at a more local hospital. 88% think the support they receive is excellent or good.
Discussion: Patients generally felt their care was good or excellent and they were keen to travel to Specialist PH Centres. However time to first diagnosis from first symptoms has not improved over the last 10 years. Many patients delay presenting to their GP and many patients see >4 doctors before being diagnosed. We need to continue to raise awareness in the UK of PH.
- Copyright ©the authors 2017