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J Cyst Fibros. 2019 May;18(3):321-333. doi: 10.1016/j.jcf.2019.03.002. Epub 2019 Mar 27.

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

Author information

1
Division of Pulmonary, Critical Care, and Sleep Medicine, Dept of Medicine, University of Washington, Seattle, WA, USA. Electronic address: ramoskj@uw.edu.
2
Department of Psychiatry and Behavioral Sciences, Behavioral Medicine Division, Department of Medicine, Pulmonary Division, Duke University Medical Center, Durham, NC, USA. Electronic address: patrick.j.smith@duke.edu.
3
National Referral Centre for Adult Cystic Fibrosis, St. Vincent's University Hospital, Dublin, Ireland. Electronic address: emckone@svhg.ie.
4
Division of Pulmonary, Allergy & Critical Care Medicine, University of Pittsburgh Medical Center, Pittsburgh, PA, USA. Electronic address: pilewskijm@upmc.edu.
5
Cystic Fibrosis Foundation, Bethesda, MD, USA.
6
Cystic Fibrosis Foundation, Bethesda, MD, USA. Electronic address: shempstead@cff.org.
7
Cystic Fibrosis Foundation, Bethesda, MD, USA. Electronic address: etallarico@cff.org.
8
Cystic Fibrosis Foundation, Bethesda, MD, USA. Electronic address: afaro@cff.org.
9
Division of Pulmonary and Critical Care Medicine, Dept of Medicine, Washington University School of Medicine, St. Louis, MO, USA. Electronic address: rosenbluthd@wustl.edu.
10
Division of Pulmonary Sciences and Critical Care Medicine, University of Colorado - Anschutz Medical Campus, Aurora, CO, USA. Electronic address: alice.l.gray@ucdenver.edu.
11
Division of Pulmonary, Allergy, Critical Care Medicine and Sleep, Dept of Medicine, University of Minnesota, Minneapolis, MN, USA. Electronic address: dunit001@umn.edu.

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

PMID:
30926322
PMCID:
PMC6545264
[Available on 2020-05-01]
DOI:
10.1016/j.jcf.2019.03.002
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