title: Predictors of non-referral of patients with cystic fibrosis for lung transplant evaluation in the United States.
abstract: BACKGROUND
  Lung transplantation is an intervention that improves survival for adult patients with cystic fibrosis (CF). Some patients with CF are never referred for lung transplant evaluation despite meeting physiologic criteria for referral.
  
  
  METHODS
  We performed a retrospective analysis of adult patients (≥18years of age) in the Cystic Fibrosis Foundation Patient Registry (CFFPR), eligible for their first evaluation for lung transplantation during the years 2001-2008 based on FEV1<30% predicted in two consecutive years.
  
  
  RESULTS
  Within the CFFPR, 1240 patients met eligibility criteria. Eight hundred and nine (65.2%) were referred for lung transplant evaluation, and 431 (34.8%) were not referred. In a multivariable model, Medicaid insurance (OR 1.79, 95% CI 1.29-2.47), older age (per 5year increase; OR 1.25, 95% CI 1.13-1.39), lack of high school graduate education (OR 2.27, 95% CI 1.42-3.64), and Burkholderia cepacia complex sputum culture positivity (OR 2.48, 95% CI 1.50-4.12) were associated with non-referral, while number of pulmonary exacerbations (OR 0.93, 95% CI 0.87-0.99) and supplemental oxygen use (OR 0.59, 95% CI 0.43-0.81) were associated with increased referral.
  
  
  CONCLUSIONS
  Despite meeting lung function criteria for lung transplant evaluation, 35% of patients with CF had not yet been referred to a lung transplant center. Predictors of non-referral included markers of low socioeconomic status, older age and B. cepacia complex sputum culture. Further work is needed to understand the outcomes for non-referred patients in order to refine referral recommendations in this population.
authors.affiliation: University of Washington Medical Center, Division of Pulmonary and Critical Care Medicine, Department of Medicine, Seattle, WA, United States. Electronic address: ramoskj@uw.edu.
authors.forename: Kathleen J
authors.initials: KJ
authors.lastname: Ramos
authors.affiliation: Centre for Heart Lung Innovation, University of British Columbia and St. Paul's Hospital, Vancouver, BC, Canada.
authors.forename: Bradley S
authors.initials: BS
authors.lastname: Quon
authors.affiliation: Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, United States.
authors.forename: Kevin J
authors.initials: KJ
authors.lastname: Psoter
authors.affiliation: University of Washington Medical Center, Division of Pulmonary and Critical Care Medicine, Department of Medicine, Seattle, WA, United States.
authors.forename: Erika D
authors.initials: ED
authors.lastname: Lease
authors.affiliation: Seattle Children's Hospital, Seattle, WA, United States; University of Washington, Department of Biostatistics, Seattle, WA, United States; University of Washington, Department of Pediatrics, Seattle, WA, United States.
authors.forename: Nicole
authors.initials: N
authors.lastname: Mayer-Hamblett
authors.affiliation: University of Washington Medical Center, Division of Pulmonary and Critical Care Medicine, Department of Medicine, Seattle, WA, United States.
authors.forename: Moira L
authors.initials: ML
authors.lastname: Aitken
authors.affiliation: University of Washington Medical Center, Division of Pulmonary and Critical Care Medicine, Department of Medicine, Seattle, WA, United States; Seattle Children's Hospital, Seattle, WA, United States; University of Washington, Department of Pediatrics, Seattle, WA, United States.
authors.forename: Christopher H
authors.initials: CH
authors.lastname: Goss
mesh_terms: D000328:Adult; D003550:Cystic Fibrosis / Q000175:diagnosis / Q000503:physiopathology / Q000601:surgery*; D018450:Disease Progression; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D016040:Lung Transplantation; D008297:Male; D018579:Patient Selection; D012017:Referral and Consultation; D012129:Respiratory Function Tests; D012189:Retrospective Studies; D012720:Severity of Illness Index; D013997:Time Factors; D014481:United States
keywords: Cystic fibrosis; Lung transplantation; Referral