The Pulmonary Hypertension Global Patient Survey: understanding the experiences and perspectives of patients.

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 via PROMs. The Global South and pulmonary hypertension groups 2 and 3 were relatively underrepresented. Encouragingly, patients' experiences of navigating healthcare were often positive, as demonstrated by a willingness to participate in research and being empowered to take charge of their health: findings which cross geographical divides.