Gaps in access to pulmonary hypertension care and opportunities for improvement: a multi-site qualitative study

Pulmonary hypertension (PH) is a progressive disease leading to right heart failure and early mortality. Early recognition of the disease and timely initiation of PH-specific therapies for qualifying PH subgroups are crucial for improving patient outcomes. Yet delays in diagnosis and treatment of PH persist. We aimed to explore patient and provider perspectives on access to and timeliness of PH care across the patient's entire health journey from symptom onset through follow-up care.

We conducted a multi-site qualitative study at three expert PH centers in the United States. We interviewed 41 key informants including 21 patients and 20 providers (physicians, physician assistants, PH pharmacists, and PH nurses). Guided by a conceptual model of the care continuum adapted to PH, we analyzed transcripts using a directed content analysis with both deductive (based on our conceptual model) and inductive coding.

We found barriers to timely access to PH care along the entire care continuum from symptom onset through receiving longitudinal PH care. Geographic barriers to care, limited non-expert PH knowledge, dismissal of patient's symptoms by providers, limited PH expert availability, and inadequate insurance coverage of PH medications emerged as the most prominent barriers to PH care access. Participants offered clear and specific solutions to address these care gaps, including establishing telementoring models to improve non-expert PH knowledge, building relationships between PH experts and community providers to bolster referral networks, leveraging technology to mitigate geographic barriers, and building satellite sites to expand access to PH experts.

Patients with PH experience significant barriers to receiving timely PH care along their entire health journey. Comprehensive transformations to PH care delivery and health policies are needed to mitigate delays and improve quality of care for patients living with this disease.