ArticleERJ open research2025
The Pulmonary Hypertension Global Patient Survey: understanding the experiences and perspectives of patients.
Article in ERJ open research, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
What it found
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Who cites it
7 citing papers in PubMed.
- Remote exercise assessment in pulmonary hypertension.Current opinion in pulmonary medicine · 2026Review
- Global Resource Disparities Between Pulmonary Hypertension Centers: Results From the International Survey by the PVRI IDDI Access to Care Workstream.Pulmonary circulation · 2026Article
- The Pulmonary Hypertension Global Patient Survey: Groups 2 and 3.Pulmonary circulation · 2026Article
- The Pulmonary Hypertension Global Patient Survey: Understanding the Invisible Burden of Paediatric Pulmonary Hypertension.Pulmonary circulation · 2026Article
- The Pulmonary Hypertension Global Patient Survey: Physical and Psychosocial Impacts on Health-Related Quality of Life.Pulmonary circulation · 2026Article
- Insights from the Pulmonary Hypertension Global Patient Survey: challenges in pulmonary hypertension care abound but so do opportunities.ERJ open research · 2025Article
- Pulmonary Hypertension Global Patient Survey: A Call to Action 2025.Pulmonary circulation · 2025Article
Corrections and comments
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Authors and funding
19 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Background: Patients' experiences of living with pulmonary hypertension are likely to vary by geography and aetiology. The Pulmonary Hypertension Global Patient Survey (PH GPS) aims to understand patients' perspectives and experiences, to drive healthcare improvements. Methods: PH GPS was collaboratively designed through a multidisciplinary, iterative, consensus-building process and beta-tested by patients. Themes included healthcare provision, self-monitoring and research. It was predominantly disseminated by pulmonary hypertension organisations to patients or their proxies across all pulmonary hypertension groups. Descriptive statistics provided a narrative summary of key results. Results: Data regarding 3329 adult (mean age 52.2 years; 81.7% female) and 135 paediatric patients were analysed, with this article focusing on the adult cohort. Most pulmonary arterial hypertension (PAH) patients reported diagnosis within 12 months of symptom onset. Variability was seen in survey response, pulmonary hypertension management and research participation, favouring the Global North and pulmonary hypertension groups 1 and 4. Genetic testing was reported by 33.9% (401 out of 1183) of patients, where eligible. 58% were experienced in self-monitoring their health. 20.6% of patients with pulmonary hypertension have completed patient-reported outcome measures (PROMs), with 7% feeling they changed management. 19.1% of adult patients have participated in research; however, 72.2% who have not participated would be willing to do so if invited. Discussion: PH GPS is the largest survey of its kind in the pulmonary hypertension field, representing a globally collaborative endeavour. It highlights achievements such as efficient PAH diagnostic time frames. Shortcomings include underappreciating quality of life reported
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.