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. 2016 Mar;15(2):196-203.
doi: 10.1016/j.jcf.2015.11.005. Epub 2015 Dec 17.

Predictors of non-referral of patients with cystic fibrosis for lung transplant evaluation in the United States

Kathleen J Ramos  1 , Bradley S Quon  2 , Kevin J Psoter  3 , Erika D Lease  4 , Nicole Mayer-Hamblett  5 , Moira L Aitken  4 , Christopher H Goss  6
Affiliations

Predictors of non-referral of patients with cystic fibrosis for lung transplant evaluation in the United States

Kathleen J Ramos et al. J Cyst Fibros. 2016 Mar.

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.

Keywords: Cystic fibrosis; Lung transplantation; Referral.

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Conflict of interest statement

Conflict of interest: The authors have no financial conflicts of interest

Figures

Figure 1
Figure 1. Patient inclusion occurs after two consecutive years of FEV1 <30% and referral status is identified from annual data entries
T0 = time of first stable FEV1 measurement <30% predicted formula image = first annual data entry after T0 (actual time between T0 and T1 will vary from patient to patient but will be less than one year) formula image = second annual entry after T0 (actual time between T0 and T2 will vary from patient to patient, but will be more than 1 year for everyone and up to 2 years for some patients); this is the time of eligibility; FEV1 remains <30%
Figure 2
Figure 2
Study cohort selection of adult patients with cystic fibrosis eligible for first lung transplant evaluation based on lung function criteria, 2001–2008
See this image and copyright information in PMC

Comment in

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