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.
Bibliographical noteFunding Information:
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.
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. The authors and the Cystic Fibrosis Foundation would like to thank the members of the focus group of CF transplant recipients and spouses of CF recipients who were instrumental in setting the tone for these Lung Transplant Referral Consensus Guidelines. The focus group included: Heather McCoy, Kasey Seymor, Tyler Patterson, Jennifer Staashelm, Lindsay Bishop, John Roddy, Scott Hastie, and Fanny Vlahos.
© 2019 The Authors
- Advanced lung disease
- Lung transplant
- Modifiable barriers