Abstract Rationale Despite clear guideline recommendations, few patients with pulmonary hypertension (PH) are referred to expert care, including high-risk patients with pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH). Characterizing population-level care networks for patients with PH may inform understanding of referral patterns and help improve PH care quality. Objective We leveraged social network analysis to characterize existing provider networks for patients with PH and to identify provider-level factors associated with connections to PH experts. Methods We linked patient-level data from the Massachusetts All-Payer Claims Database with provider-level data to identify all adults diagnosed with PH in 2014-2018 and all relevant providers who saw those patients for PH. We constructed provider networks among all patients with PH (“All-PH network”) and subsets of patients with risk factors for PAH or CTEPH (“PAH network” and “CTEPH network,” respectively). Our provider-level outcome was connection to PH experts, defined as sharing at least one patient with an expert. Within each network, we conducted multivariable regression models to determine the association between provider-level variables (specialty, practice location, PH panel volume) and our outcome. Results We identified 4,766 providers and 8,970 patients with PH, of whom 1,768 (19.7%) had PAH risk factors and 2,164 (24.1%) had CTEPH risk factors. Few providers shared patients with PH experts (31% All-PH network, 35% PAH network, 19% CTEPH network). Within the All-PH network, primary care providers had 59% decreased odds of PH expert connection compared to non-expert pulmonologists (adjusted odds ratio 0.41, 95% confidence interval 0.32-0.51). Providers practicing outside the Greater Boston area and those with smaller PH panel volumes were also less likely to be connected to a PH expert. Findings were similar among the PAH and CTEPH networks. Conclusions We found significant gaps in connections to expert care, even among providers caring for patients at risk for PAH or CTEPH, which may be driven in part by limited provider experience, geographic barriers, and disconnected providers and care networks. Multifaceted strategies may be needed to improve referral rates for patients with PH. Primary Source of Funding Parker B. Francis Fellowship Program and the Doris Duke Foundation
Gillmeyer et al. (Fri,) studied this question.