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

Ramos, Kathleen J.; Smith, Patrick J.; McKone, Edward F.; Pilewski, Joseph M.; Lucy, Amy; Hempstead, Sarah E.; Tallarico, Erin; Faro, Albert; Rosenbluth, Daniel B.; Gray, Alice L.; Dunitz, Jordan M.

doi:10.1016/j.jcf.2019.03.002

Cited by 228Transplantation: Methods and OutcomesCystic Fibrosis Research AdvancesOrgan Donation and Transplantation

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

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Ramos, Kathleen J., Smith, Patrick J., McKone, Edward F., Pilewski, Joseph M., Lucy, Amy, Hempstead, Sarah E., Tallarico, Erin, Faro, Albert +3 more·2019·Journal of Cystic Fibrosis

DOI 10.1016/j.jcf.2019.03.002PMC PMC6545264

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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.

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The Cystic Fibrosis Foundation established transplant referral guidelines for cystic fibrosis centers.
“Transplant referral guidelines were established by the CF Foundation for use by CF centers.(134)”
From Consensus document for the selection of lung transplant candidates: An update from the International Society for Heart and Lung Transplantation. (2021) · cites this paper as [134]

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Pulmonary hypertension is associated with higher mortality in cystic fibrosis patients awaiting lung transplantation.
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Chen, E. Y., Homa, K. A., Goggin, J. L., Sabadosa, K. A., Hempstead, S. E., Marshall, B. C., Faro, A., & Dellon, E. P. (2017) · Journal of Cystic Fibrosis · doi:10.1016/j.jcf.2017.08.010 · Cited by 21 · see citing works
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Management and prophylaxis of bacterial and mycobacterial infections among lung transplant recipients
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Deaths Related to Bronchial Arterial Embolization in Patients With Cystic Fibrosis
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Hemodynamic predictors of long term survival in end stage cystic fibrosis
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A clinical tool to calculate post‐transplant survival using pre‐transplant clinical characteristics in adults with cystic fibrosis
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In the south, if you give us lemons, we will make you lemonade
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WS18.4 Evaluation of transplantation information delivered to patients and their relatives by the professionals from cystic fibrosis centres and transplant centres and from transplanted peer-patients in France
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FEV1 as a guide to lung transplant referral in young patients with cystic fibrosis
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The future of cystic fibrosis care: a global perspective
Bell, S. C., Mall, M. A., Gutierrez, H., Macek, M., Madge, S. L., Davies, J. C., Burgel, P., Tullis, E., Castaños, C., Castellani, C., et al. (2019) · The Lancet Respiratory Medicine · doi:10.1016/s2213-2600(19)30337-6 · Cited by 1,042 · see citing works
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Consensus document for the selection of lung transplant candidates: An update from the International Society for Heart and Lung Transplantation.
Leard, L. E., Holm, A. M., Valapour, M., Glanville, A. R., Attawar, S., Aversa, M., Campos, S. V., Christon, L. M., Cypel, M., Dellgren, G., et al. (2021) · The Journal of Heart and Lung Transplantation · doi:10.1016/j.healun.2021.07.005 · Cited by 821 · see citing works
“134,261 These goals will continue to be important even in the era of highly effective CFTR modulators, particularly in patients who are ineligible for, cannot tolerate, or do not respond to such therapy, or if adverse long-term clinical effects arise.”
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Cystic fibrosis
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CFTR Modulators: The Changing Face of Cystic Fibrosis in the Era of Precision Medicine
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Rapid Improvement after Starting Elexacaftor–Tezacaftor–Ivacaftor in Patients with Cystic Fibrosis and Advanced Pulmonary Disease
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Cystic fibrosis
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Cystic Fibrosis Lung Disease: An Overview
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Developments in lung transplantation over the past decade
van der Mark, S. C., Hoek, R. A. S., & Hellemons, M. E. (2020) · European Respiratory Review · doi:10.1183/16000617.0132-2019 · Cited by 147 · see citing works
Cystic Fibrosis
Dickinson, K. M., & Collaco, J. M. (2021) · Pediatrics in Review · doi:10.1542/pir.2019-0212 · Cited by 146 · see citing works
ESPEN-ESPGHAN-ECFS guideline on nutrition care for cystic fibrosis
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Review of Cystic Fibrosis
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Standards for the care of people with cystic fibrosis (CF); recognising and addressing CF health issues
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Sustained effectiveness of elexacaftor-tezacaftor-ivacaftor in lung transplant candidates with cystic fibrosis
Martin, C., Reynaud‐Gaubert, M., Hamidfar, R., Durieu, I., Murris‐Espin, M., Danner‐Boucher, I., Chiron, R., Leroy, S., Douvry, B., Grenet, D., et al. (2022) · Journal of Cystic Fibrosis · doi:10.1016/j.jcf.2022.01.012 · Cited by 66 · see citing works
The Changing Epidemiology of Cystic Fibrosis
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Cystic fibrosis foundation position paper: Redefining the CF care model
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Major Decrease in Lung Transplantation for Patients with Cystic Fibrosis in France
Martin, C., Legeai, C., Regard, L., Cantrelle, C., Dorent, R., Carlier, N., Kerbaul, F., & Burgel, P. (2021) · American Journal of Respiratory and Critical Care Medicine · doi:10.1164/rccm.202109-2121le · Cited by 56 · see citing works
Cystic fibrosis foundation position paper: Redefining the cystic fibrosis care team
Brown, R. F., Close, C. T., Mailes, M. G., Gonzalez, L. J., Goetz, D., Filigno, S. S., Preslar, R., Tran, Q. T., Hempstead, S. E., Lomas, P., et al. (2024) · Journal of Cystic Fibrosis · doi:10.1016/j.jcf.2024.09.011 · Cited by 49 · see citing works
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Pulmonary Complications of Cystic Fibrosis
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Multisystemic Effects of Elexacaftor–Tezacaftor–Ivacaftor in Adults with Cystic Fibrosis and Advanced Lung Disease
Burgel, P., Paillasseur, J.-L., Durieu, I., Reynaud‐Gaubert, M., Hamidfar, R., Murris‐Espin, M., Danner‐Boucher, I., Chiron, R., Leroy, S., Douvry, B., et al. (2024) · Annals of the American Thoracic Society · doi:10.1513/annalsats.202312-1065oc · Cited by 47 · see citing works
Nontuberculous Mycobacterial Infections in Cystic Fibrosis.
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Short-term effect of elexacaftor-tezacaftor-ivacaftor on lung function and transplant planning in cystic fibrosis patients with advanced lung disease
Bermingham, B., Rueschhoff, A., Ratti, G. A., NeSmith, A., Goodwin, D. L., Gray, S. L., Flume, P. A., Solomon, G. M., Cohen, L., & Garcia, B. A. (2021) · Journal of Cystic Fibrosis · doi:10.1016/j.jcf.2021.05.009 · Cited by 35 · see citing works
Lung Transplantation for Pulmonary Arterial Hypertension
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Transition to adult care in cystic fibrosis: The challenges and the structure
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Impact of Socioeconomic Position on Access to the U.S. Lung Transplant Waiting List in a Matched Cystic Fibrosis Cohort
Lehr, C. J., Fink, A. K., Skeans, M. A., Faro, A., Fernandez, G. S., Dasenbrook, E. C., & Valapour, M. (2020) · Annals of the American Thoracic Society · doi:10.1513/annalsats.202001-030oc · Cited by 31 · see citing works
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CFTR Modulator Therapy and Its Impact on Lung Transplantation in Cystic Fibrosis
Benden, C., & Schwarz, C. (2021) · Pulmonary Therapy · doi:10.1007/s41030-021-00170-9 · Cited by 30 · see citing works
Bridging the survival gap in cystic fibrosis: An investigation of lung transplant outcomes in Canada and the United States
Stephenson, A. L., Ramos, K. J., Sykes, J., Ma, X., Stanojevic, S., Quon, B. S., Marshall, B. C., Petren, K., Ostrenga, J. S., Fink, A. K., et al. (2021) · The Journal of Heart and Lung Transplantation · doi:10.1016/j.healun.2020.12.001 · Cited by 30 · see citing works
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Organ Transplantation for Cystic Fibrosis
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The Multifaceted Roles of MicroRNAs in Cystic Fibrosis
Palma, F. D. E. D., Raia, V., Kroemer, G., & Maiuri, M. C. (2020) · Diagnostics · doi:10.3390/diagnostics10121102 · Cited by 30 · see citing works
Infections in lung transplanted patients: A review
Dettori, M., Riccardi, N., Canetti, D., Antonello, R. M., Piana, A. F., Palmieri, A., Castiglia, P., Azara, A., Masiá, M. D., Porcu, A., et al. (2022) · Pulmonology · doi:10.1016/j.pulmoe.2022.04.010 · Cited by 29 · see citing works
Pulmonary Complications in Cystic Fibrosis: Past, Present, and Future
Mingora, C. M., & Flume, P. A. (2021) · CHEST Journal · doi:10.1016/j.chest.2021.06.017 · Cited by 27 · see citing works
Sex differences in outcomes of people with cystic fibrosis treated with elexacaftor/tezacaftor/ivacaftor
Wang, A., Lee, M., Keller, A. E., Jian, S., Lowe, K., Finklea, J. D., & Jain, R. (2023) · Journal of Cystic Fibrosis · doi:10.1016/j.jcf.2023.05.009 · Cited by 27 · see citing works
Current trends in candidate selection, contraindications, and indications for lung transplantation
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MicroRNA-34a: A Novel Therapeutic Target in Fibrosis
Zhao, M., Qi, Q., Liu, S., Huang, R. S., Shen, J., Zhu, Y., Chai, J., Zheng, H., Wu, H., & Liu, H. (2022) · Frontiers in Physiology · doi:10.3389/fphys.2022.895242 · Cited by 26 · see citing works
Guidance and standard operating procedures for functional exercise testing in cystic fibrosis
SAYNOR, Z. L., Gruet, M., McNarry, M. A., Button, B., Morrison, L., Wagner, M., Sawyer, A., Hebestreit, H. U., Radtke, T., & Urquhart, D. S. (2023) · European Respiratory Review · doi:10.1183/16000617.0029-2023 · Cited by 26 · see citing works
Survival and Lung Transplant Outcomes for Individuals With Advanced Cystic Fibrosis Lung Disease Living in the United States and Canada
Ramos, K. J., Sykes, J. R., Stanojevic, S., Ma, X., Ostrenga, J. S., Fink, A. K., Quon, B. S., Marshall, B. C., Faro, A., Petren, K., et al. (2021) · CHEST Journal · doi:10.1016/j.chest.2021.04.010 · Cited by 24 · see citing works
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Risk factors and outcomes of non-tuberculous mycobacteria infection in lung transplant recipients: A systematic review and meta-analysis
Marty, P. K., Yetmar, Z. A., Gerberi, D., Escalante, P., Pennington, K. M., & Mahmood, M. (2022) · The Journal of Heart and Lung Transplantation · doi:10.1016/j.healun.2022.10.004 · Cited by 23 · see citing works
Lung Transplantation and the Era of the Sensitized Patient
Young, K. A., Ali, H. A., Beermann, K. J., Reynolds, J. M., & Snyder, L. D. (2021) · Frontiers in Immunology · doi:10.3389/fimmu.2021.689420 · Cited by 21 · see citing works
Addressing lung transplant with adults with cystic fibrosis: A qualitative analysis of patients' perspectives and experiences
Ramos, K. J., Hobler, M. R., Engelberg, R. A., Curtis, J. R., Zander, M. I., Howard, S. S., Goss, C. H., & Aitken, M. L. (2019) · Journal of Cystic Fibrosis · doi:10.1016/j.jcf.2019.04.007 · Cited by 21 · see citing works
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Management and prophylaxis of bacterial and mycobacterial infections among lung transplant recipients
Okamoto, K., & Santos, C. A. Q. (2020) · Annals of Translational Medicine · doi:10.21037/atm.2020.01.120 · Cited by 19 · see citing works
Epidemiology of Burkholderia Infections in People with Cystic Fibrosis in Canada between 2000 and 2017
Zlosnik, J. E. A., Henry, D. A., Hird, T. J., Hickman, R., Campbell, M. E., Cabrera, A., Chiavegatti, G. L., Chilvers, M. A., & Sadarangani, M. (2020) · Annals of the American Thoracic Society · doi:10.1513/annalsats.201906-443oc · Cited by 20 · see citing works
International Society for Heart and Lung Transplantation Consensus Statement on the Referral and Selection of Pediatric Lung Transplant Candidates
Hayes, D., Avdimiretz, N., Brugha, R. E., Mullen, M. P., Paraskeva, M. A., Mıdyat, L., Solomon, M. P., Sweet, S. C., Melicoff, E., Danziger‐Isakov, L. A., et al. (2025) · The Journal of Heart and Lung Transplantation · doi:10.1016/j.healun.2025.08.005 · Cited by 19 · see citing works
Re-imagining cystic fibrosis care: next generation thinking
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Incorporating patient and caregiver feedback into lung transplant referral guidelines for individuals with cystic fibrosis—Preliminary findings from a novel paradigm
Smith, P. J., Dunitz, J., Lucy, A., Hempstead, S. E., Tallarico, E., Faro, A., Pilewski, J. M., & Ramos, K. J. (2020) · Clinical Transplantation · doi:10.1111/ctr.14038 · Cited by 17 · see citing works
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The effect of early tracheal extubation combined with physical training on pulmonary rehabilitation of patients after lung transplantation: a randomized controlled trial
Wu, T., Zhou, S., Wu, B. Y., Chen, J., Zhu, X., & Cai, Y. (2022) · Journal of Thoracic Disease · doi:10.21037/jtd-22-119 · Cited by 17 · see citing works
Evolving Nutritional Needs in Cystic Fibrosis
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Lumacaftor/ivacaftor-associated health stabilisation in adults with severe cystic fibrosis
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Lung Transplant Referral Consensus Guidelines for Individuals with Cystic Fibrosis: An Opportunity for Partnerships between CF and Lung Transplant Centers
Ramos, K. J., Smith, P. J., McKone, E. F., Pilewski, J. M., Lucy, A., Hempstead, S. E., Tallarico, E., Faro, A., Rosenbluth, D., Gray, A. L., et al. (2019) · The Journal of Heart and Lung Transplantation · doi:10.1016/j.healun.2019.01.840 · Cited by 1 · see citing works
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Lung Transplantation for Cystic Fibrosis
Moghbeli, K., & Morrell, M. R. (2024) · Organ and tissue transplantation · doi:10.1007/978-3-030-36123-5_9

Authors: Ramos, K. J., Smith, P. J., McKone, E. F., Pilewski, J. M., Lucy, A., Hempstead, S. E., Tallarico, E., Faro, A., Rosenbluth, D. B., Gray, A. L., & Dunitz, J. M.
Affiliations: University of Washington (US)
Duke University (US)
St. Vincent's University Hospital (IE)
University of Pittsburgh Medical Center (US)
Cystic Fibrosis Foundation (US)
Washington University in St. Louis (US)
University of Colorado Anschutz (US)
University of Minnesota (US)
Corresponding author: Ramos, Kathleen J.
ORCID: Ramos, Kathleen J.
Smith, Patrick J.
McKone, Edward F.
Pilewski, Joseph M.
Lucy, Amy
Hempstead, Sarah E.
Tallarico, Erin
Faro, Albert
Rosenbluth, Daniel B.
Gray, Alice L.
Dunitz, Jordan M.
Venue: Journal of Cystic Fibrosis
Publisher: Elsevier BV
Published: 2019-05
Volume: 18
Issue: 3
Pages: 321-333
ISSN: 1569-1993 (ISSN-L)
DOI: 10.1016/j.jcf.2019.03.002
PMC: PMC6545264
OpenAlex: W2922985458
Semantic Scholar: d3bd917e78c60426a4421e1e1d3a15106259eb1f
Cited by: 227
References: 102
Citations by year: 2026: 16 · 2025: 20 · 2024: 29 · 2023: 48 · 2022: 35 · 2021: 34 · 2020: 33 · 2019: 11
FWCI: 5.82
Type: journal article
Language: en
Open access: hybrid
doi.org
Licence: cc-by-nc-nd
www.elsevier.com/tdm/userlicense/1.0/ (tdm)
www.elsevier.com/legal/tdmrep-license (tdm)
creativecommons.org/licenses/by-nc-nd/4.0/ (vor)
Locations: Journal of Cystic Fibrosis (publishedVersion, cc-by-nc-nd)
PubMed (publishedVersion)
PubMed Central (acceptedVersion)
Digital Commons@Becker (Washington University School of Medicine) (submittedVersion, cc-by-nc-nd)
Funders: NIH (K23HL138154)
CF Foundation (RAMOS17A0, LEASE16A3)
Topics: Health Sciences › Medicine › Surgery › Transplantation: Methods and Outcomes
Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Cystic Fibrosis Research Advances
Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Organ Donation and Transplantation
Keywords: lung transplantation, transplant referral, referral timing, patient counseling, access to transplantation, consensus recommendations, patient and family involvement
MeSH terms: Decision Making, Shared, Cystic Fibrosis, Humans, Referral and Consultation, Lung Transplantation, Practice Guidelines as Topic, Patient Selection

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

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