Background

Findings from the third survey into the lived experiences of pulmonary hypertension (PH) carried out by the Pulmonary Hypertension Association UK (PHA-UK) [1] had a big impact underpinning the charity?s work supporting PH patients

Aims

To update knowledge of PH patients lived experience in the UK.

Methods

A quantitative survey covering diagnosis, treatment, and living with PH was made available in December 2022 to PHA-UK members and patients on PH therapy.

Results

512 responses have been received (mean age 63 years, 65% female).  The time between first experiencing symptoms and diagnosis was ?1 year for 50% of patients.  32% had waited ?1 year before visiting a doctor. For 25%, after seeing their GP it took ?1 year to be referred to hospital. 35% of patients saw 4+ doctors before receiving their diagnosis. When asked ?What matters to you most when it comes to your treatment??  52% listed Improvement in overall quality of life (QOL), 33% put Increasing life expectancy, 14% Reducing symptoms and 3% felt Lack of side effects was most important. 86% of respondents reported an improvement in QOL when on PH specific therapy and 78%.felt their management and treatment had reduced their concerns over life expectancy.

Discussion

The findings of this survey differ little from the survey conducted by PHA-UK in 2017. Despite much work by the PH community to raise awareness of PH, the time between first experiencing symptoms and diagnosis was ?1 year for 50% of patients (48% in 2017). PHA-UK will continue to work to try to improve awareness of PH and to support patients.

1. Armstrong I et al. The patient experience of pulmonary hypertension: a large cross-sectional study of UK patients. BMC Pulm Med. 2019;19:67.