The Pulmonary Hypertension Global Patient Survey (PH GPS), the largest survey of its kind in the pulmonary hypertension field, was collaboratively designed through a multidisciplinary consensus process and disseminated by pulmonary hypertension organizations globally. The survey analyzed data from 3,329 adult patients (mean age 52.2 years, 81.7% female) and 135 paediatric patients, examining healthcare provision, self-monitoring, and research participation.
Key findings showed most pulmonary arterial hypertension patients were diagnosed within 12 months of symptom onset, though significant variability existed in survey response, disease management, and research participation, favoring the Global North and World Health Organisation (WHO) groups 1 (pulmonary arterial hypertension) and 4 (chronic thromboembolic pulmonary hypertension). Among eligible patients, 33.9% reported genetic testing. Fifty-eight percent engaged in health self-monitoring, while only 20.6% had completed patient-reported outcome measures, with just 7% reporting these influenced their management. Although 19.1% of adults had participated in research, 72.2% of non-participants expressed willingness to participate if invited.
The survey highlighted achievements including efficient pulmonary arterial hypertension diagnostic timeframes, but revealed shortcomings such as underutilization of quality-of-life assessments through Patient reported Outcome Measures (PROMs) and underrepresentation of the Global South and pulmonary hypertension World Health Organistaion groups 2 (pulmonary hypertension associated with left heart disease) and 3 (pulmonary hypertension associated with lung disease).
Despite these gaps, patients demonstrated positive experiences navigating healthcare, showing empowerment in managing their health and strong willingness to participate in research across geographical boundaries.
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Citation
The Pulmonary Hypertension Global Patient Survey: understanding the experiences and perspectives of patients, Joseph Newman, Hakim Ghani, Shiv Munagala, Eva Otter, Gerald Fischer, Marcin Kurzyna, Gergely Meszaros, Millicent Stone, Lynsay MacDonald, Shahin Moledina, Luke Howard, Wendy Gin-Sing, Pisana Ferrari, Maurice Beghetti, Katherine Bunclark, Mark Toshner, Matt Granato, The PH GPS consortium, Joanna Pepke-Zaba, ERJ Open Research 2025 11(6): 00297-2025; DOI: https://doi.org/10.1183/23120541.00297-2025