Quality of Pulmonary Hypertension Care Within Expert PH Centers: Patient and Provider Perspectives From a Multi-Site Qualitative Study.

Abstract

Pulmonary hypertension (PH) is a progressive disease associated with high morbidity and mortality. Despite advancements, gaps in PH care quality persist, though the drivers of these gaps are incompletely understood. Thus, we sought to explore patient and provider perspectives on high-quality PH care. We conducted a multi-site qualitative study at three expert PH centers in the United States, involving telephone interviews with 20 providers and 22 patients. We conducted a reflexive thematic analysis, using the Institute of Medicine's (IOM) six domains of healthcare quality (safe, effective, patient-centered, timely, efficient, and equitable) as an a priori coding scheme, with subcodes developed under each domain. We then compared codes across IOM domains and patient and provider data to identify overarching themes. Our analysis revealed three cross-cutting themes that encompassed all six IOM healthcare quality domains, covered all identified subcodes, and represented both provider and patient perspectives: (1) "It takes a village," that is, the expansive team needed to provide care for a patient with PH; (2) The need for care coordination within a PH center, with specialty pharmacies, and with community providers; and (3) PH centers as a model to deliver high-quality care. Finally, participants offered clear recommendations for addressing gaps in care quality, including expanding village members, such as the addition of social workers, improving care coordination by improving patient follow-up and tracking, and expanding access to PH centers by having a PH center presence in the community. These findings highlight key areas for targeted improvements in PH care quality.