Background Pulmonary Hypertension Association UK (PHA-UK) is the only charity in the UK especially for people affected by pulmonary hypertension (PH). To gain information on the patient journey and how PH impacts on daily living, surveys have been conducted by PAH-UK in 2007, 2010 and more recently in 2016. This paper reports the 2016 survey and provides comparisons with previous survey results.

Method A quantitative survey consisting of 4 sections regarding diagnosis, management, ongoing quality-of-life and treatment was available to complete online via PHA-UK’s website or by hard copy sent to PHA-UK members and to patients on PH-specific targeted therapy.

Results 551 responses were received. Participant mean age was 58.3 ± 16.6 years and age at diagnosis was 52.3 ± 18.8 years. 49% of patients had symptoms for >6 months before going to see a doctor and 22% were seen by 4 or more doctors before diagnosis. Time from first symptoms to diagnosis was >1 year in 49% with 31% of patients admitted as an emergency because of their symptoms. After diagnosis, 48% see a specialist at least every 6 months, 87% at least every 12 months. 62% think the support they receive is excellent and 26% good. 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.

Discussion This survey found that care of patients with PH is generally good or excellent and patients were keen to travel to Specialist PH Centres for their care. The early symptoms of pulmonary hypertension can be mild and are common to many diseases so it is often a lengthy process to arrive at the diagnosis. Compared with the previous survey the percentage of patients seeing >4 doctors before diagnosis was reduced (22% vs 47%) suggesting an increasing awareness of pulmonary hypertension amongst physicians. However, 49% of patients had symptoms for >6 months before presenting, which has not improved since previous surveys. As earlier diagnosis of patients results in better long-term survival, further work should be undertaken to continue to raise awareness in the UK of pulmonary hypertension.