Background

Clinical trial methodology in pulmonary hypertension (PH) is evolving, including the use of digital technology, decentralisation and novel endpoints (Weatherald, J. et al. Lancet 2022; 400:1884-98). The success of this relies on patient engagement and understanding the patient perspective. 

Aim

To understand the perspectives of patients with PH on these areas of trial design:

· Patient reported outcome measures

· Drug selection

· Digital technology

· Participation

· Hospital visits

· Remote monitoring

· 6-Minute Walk Test

Methods

A widely-disseminated national online patient survey was co-designed and tested with patients, the Pulmonary Hypertension Association UK and clinical researchers. 61 questions were mapped to a draft protocol with a view to informing trial design.

Results

112 patients responded. A matrix of demographics against key domains is shown in the summary figure. 22% have participated in a drug trial. Of whom, 74% had a positive experience and 94% would participate again. High proportions of patients are enthusiastic about digital technology in clinical trials.

Conclusions

The results have directly informed the methodology of two clinical trials due to open in 2023 and remain an open resource via PHA-UK. Patients are keen to engage with research including via digital means. Understanding patient perspectives and co-designing clinical research is key to their experience and recruitment.

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