Background

Pulmonary hypertension (PH) is caused by a heterogenous group of conditions that can affect patients of all ages in diverse ways, with differing treatment options and prognoses. Patients? experience of living with PH is likely to vary considerably within and between countries, but the extent of this variation is unknown.

Aim

To understand the impacts of PH (Groups 1-4) on adult and paediatric patients? health-related quality of life and their experience of healthcare, research and self-management.

Methods

An online survey was constructed via an iterative process drawing on literature and expert experience. Themes include diagnosis, treatment, quality of life, hospital visits, telemedicine, research participation, financial burdens, self-monitoring with digital technology and patient reported outcome measures. It was written by a multidisciplinary panel of specialists and patient group advocates from national and international pulmonary hypertension associations (PHAs). It was overseen by the Pulmonary Vascular Research Institute (PVRI) and endorsed by ERN-Lung. The multi-lingual survey will be distributed globally via PHAs, social media and the PVRI. Responses to each question will be analysed by descriptive statistics with analysis of trends between countries and geographical regions. The results from this global survey will be published in a peer-reviewed journal and presented at international meetings.

Summary

This is the first global survey to assess the impacts of PH on patients and their experience of healthcare and research. Understanding this is key to international guideline development and directing future research, to improve care and outcomes for patients globally.