Almost 4,000 patients and carers across 85 countries completed Phase 1 of the Pulmonary Hypertension Global Patient Survey (PH GPS). The survey was translated into 24 languages and launched in October 2023. The survey was written by a multidisciplinary panel of pulmonary hypertension specialists and patient group advocates from the pulmonary hypertension associations of Europe, United States, United Kingdom and South Africa. It was coordinated by the Pulmonary Vascular Research Institute (PVRI) “Patient Engagement & Empowerment Workstream”, and was endorsed by the ERN-LUNG
This survey, the first of its kind, was designed to help improve global understandings of how pulmonary hypertension affects the lives of patients and in what ways pulmonary hypertension care needs to be improved. Questions included diagnostic tests and timelines, genetic testing, treatments, financial burdens, hospital visits, research participation, quality of life, telemedicine, patient-reported outcome measures, and self-monitoring with digital technology.
The survey collected almost 400,000 data points from adult patients, caregivers, and parents/guardians of paediatric patients. The data is now being analyzed using a mixed-methods approach, including quantitative statistics and qualitative thematic analysis.
The findings from this comprehensive global survey have the potential to significantly expand our understanding of pulmonary hypertension symptoms, treatments, and patient quality of life worldwide. The insights could also play a key role in shaping healthcare policies and enhancing clinical practices to ultimately improve outcomes for diverse pulmonary hypertension patient populations.
Read more the PVRI website at this link
See also our previous article at this link
PH GPS poster presented at the European Respiratory Society (ERS) Annual Congress 2024