Survival and lung transplant outcomes for individuals with advanced cystic fibrosis lung disease in the United States and Canada: an analysis of national registries.

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Understanding how health outcomes differ for cystic fibrosis (CF) patients with advanced lung disease in the United States (US) compared to Canada has health policy implications.What are rates of lung transplant (LTx) and rates of death without LTx in the US and Canada among individuals with forced expiratory volume in 1 second (FEV1) <40% predicted?and Methods: Retrospective population-based cohort study, 2005-2016, using the US CF Foundation, United Network for Organ Sharing, and Canadian CF registries. Individuals with CF and ≥2 FEV1 measurements <40% predicted within a 5-year period, age ≥6 years, without prior LTx were included. Multivariable competing risk regression for time to death without LTx (LTx as a competing risk) and time to LTx (death as a competing risk) was performed.There were 5,899 (53% male) and 905 (54% male) CF patients with FEV1 <40% predicted in the US and Canada, respectively. Multivariable competing risk regression models identified an increased risk of death without LTx (HR 1.79, 95% CI 1.52-2.1) and decreased LTx (HR 0.66, 95% CI 0.58-0.74) among individuals in the US compared to Canada. More pronounced differences were seen in the patients in the US with Medicaid/Medicare insurance compared to Canadians (multivariable HR for death without LTx 2.24, 95% CI 1.89-2.64; multivariable HR for LTx 0.54, 95% CI 0.47-0.61). Patients with non-White race were also disadvantaged (multivariable HR for death without LTx 1.56, 95% CI 1.32-1.84; multivariable HR for LTx 0.47, 95% CI 0.36-0.62).There are lower rates of LTx and an increased risk of death without LTx for CF patients with FEV1 <40% predicted in the US compared to Canada. Findings are more striking among US CF patients with Medicaid/Medicare health insurance, and non-White patients in both countries, raising concerns about underutilization of LTx among vulnerable populations.

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Authors: Kathleen J Ramos, Jenna Sykes, Sanja Stanojevic, Xiayi Ma, Joshua S Ostrenga, Aliza Fink, Bradley S Quon, Bruce C Marshall, Albert Faro, Kristofer Petren, Alexander Elbert, Christopher H Goss, Anne L Stephenson