Organization of pulmonary hypertension care in non-expert care settings: Lessons learned from a multi-site study

Objective: To examine how select Veterans Health Administration (VA) sites organized care for patients with pulmonary hypertension (PH), with a focus on describing existing practices and identifying unmet needs within the sites.

Data sources and study setting: Semi-structured interviews across seven diverse VA sites.

Study design: Qualitative multiple-site study.

Data collection/extraction methods: We interviewed 54 key informants including pulmonologists, cardiologists, primary care providers, advanced care practitioners, pharmacists, and clinical leaders to assess the structures and processes of PH care delivery. We analyzed transcripts using directed content analysis and constructed site profiles for each site, comparing profiles to existing guidelines for PH expert centers.

Principal findings: Sites varied considerably in how they organized PH care, with wide variation in the availability of structures and processes recommended for expert centers, including availability of PH expertise and PH-specific resources, multidisciplinary approach to care, establishment of clear referral pathways, and presence of PH education. Further, participants identified three areas of unmet need not directly addressed within current guidelines, including better integration of pharmacists into multidisciplinary teams, early and routine involvement of palliative care, and improved care coordination efforts.

Conclusions: The rising prevalence of PH and evolution of treatments for common PH subgroups underscore the need to standardize PH care delivery in non-expert care settings to improve care quality and patient outcomes. The insight gained from this study may inform the development of guidance appropriate for care settings outside of expert centers.