Lung transplant referral for individuals with cystic fibrosis: Cystic Fibrosis Foundation consensus guidelines

Abstract

Objective: Provide recommendations to the cystic fibrosis (CF) community to facilitate timely referral for lung transplantation for individuals with CF.

Methods: The CF Foundation organized a multidisciplinary committee to develop CF Lung Transplant Referral Consensus Guidelines. Three workgroups were formed: timing for transplant referral; modifiable barriers to transplant; and transition to transplant care. A focus group of lung transplant recipients with CF and spouses of CF recipients informed guideline development.

Results: The committee formulated 21 recommendation statements based on literature review, committee member practices, focus group insights, and in response to public comment. Critical approaches to optimizing access to lung transplant include early discussion of this treatment option, assessment for modifiable barriers to transplant, and open communication between the CF and lung transplant centers.

Conclusions: These guidelines will help CF providers counsel their patients and may reduce the number of individuals with CF who die without consideration for lung transplant.

Keywords: Advanced lung disease; Communication; Lung transplant; Modifiable barriers; Referral; Transplant.

Conflict of interest statement

Conflict of Interests statement: funding for KJR includes: NIH (K23HL138154) and CF Foundation (RAMOS17A0; LEASE16A3) grants; no other relevant sources of financial support or conflicts of interest identified for the authors

Copyright © 2019 The Authors. Published by Elsevier B.V. All rights reserved.

Figures

Figure 1:. Lung function thresholds for discussion of lung transplantation and timing of lung transplant referral