Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Review
. 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

Affiliations
Review

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

Kathleen J Ramos et al. J Cyst Fibros. 2019 May.

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.

PubMed Disclaimer

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

Figures

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

References

    1. Ramos KJ, Quon BS, Heltshe SL, Mayer-Hamblett N, Lease ED, Aitken ML, Weiss NS, Goss CH: Heterogeneity in Survival in Adult Patients With Cystic Fibrosis With FEV1 < 30% of Predicted in the United States. Chest 2017, 151(6):1320–1328. - PMC - PubMed
    1. Martin C, Hamard C, Kanaan R, Boussaud V, Grenet D, Abely M, Hubert D, Munck A, Lemonnier L, Burgel PR: Causes of death in French cystic fibrosis patients: The need for improvement in transplantation referral strategies! J Cyst Fibros 2016, 15(2):204–212. - PubMed
    1. Braun AT, Dasenbrook EC, Shah AS, Orens JB, Merlo CA: Impact of lung allocation score on survival in cystic fibrosis lung transplant recipients. The Journal of heart and lung transplantation : the official publication of the International Society for Heart Transplantation 2015, 34(11):1436–1441. - PMC - PubMed
    1. Tong A, Chapman JR, Israni A, Gordon EJ, Craig JC: Qualitative research in organ transplantation: recent contributions to clinical care and policy. Am J Transplant 2013, 13(6):1390–1399. - PubMed
    1. Barbour RS: The role of qualitative research in broadening the ‘evidence base’ for clinical practice. J Eval Clin Pract 2000, 6(2):155–163. - PubMed

Publication types

MeSH terms