A multi-site qualitative study exploring both patient and provider perspectives on access to and timeliness of pulmonary hypertension (PH) care across the full care continuum—from symptom onset through long-term management was recently published in BMC Pulmonary Medicine. Interviews with 41 participants (21 patients, 20 providers) at three U.S. expert pulmonary hypertension centers revealed persistent delays in diagnosis, referral, treatment initiation, and follow-up care.
Key barriers included:
- Limited PH knowledge among non-experts
- Dismissal of symptoms by providers
- Geographic and socioeconomic barriers
- Limited availability of pulmonary hypertension experts
- High medication costs and insurance coverage challenges
Patients often had to self-advocate or navigate complex systems to reach care. Providers echoed the strain on resources and highlighted the need for systemic solutions. Recommendations included expanding telementoring for non-expert providers, increasing use of telehealth, building referral networks, and improving medication access through policy reform.
The study concludes that addressing these multifaceted barriers requires coordinated action at provider, system, and policy levels to improve timely, equitable care for patients with pulmonary hypertension.
Summary by Deger Kesimoglu, AfPH volunteer
Read more at this link on BMC Pulmonary Medicine
Citation
Gillmeyer, K.R., Shusterman, S., Rinne, S.T. et al. Gaps in access to pulmonary hypertension care and opportunities for improvement: a multi-site qualitative study. BMC Pulm Med 25, 355 (2025). https://doi.org/10.1186/s12890-025-03817-4