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Differences in the Transition Towards Lung Transplantation for Cystic Fibrosis Between the United States and United Kingdom
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A7765 - Differences in the Transition Towards Lung Transplantation for Cystic Fibrosis Between the United States and United Kingdom
Author Block: C. A. Merlo1, C. J. Francis2, N. D. Medhurst2, A. L. Thaxton1, E. Tallarico3, R. Cosgriff2, R. Dunk4, K. G. Brownlee2, J. S. Elborn4, E. L. Bush5, P. M. Shah1, N. E. West1; 1Medicine/ Pulmonary and Critical Care, Johns Hopkins, Baltimore, MD, United States, 2Cystic Fibrosis Trust, London, United Kingdom, 3Cystic Fibrosis Foundation, Bethesda, MD, United States, 4Royal Brompton, London, United Kingdom, 5Surgery/ Thoracic Surgery, Johns Hopkins, Baltimore, MD, United States.
Rationale: Therapeutic advances in cystic fibrosis (CF) have increased median predicted survival to 47 years in the United States (US) and United Kingdom (UK), yet many individuals with CF develop progressive disease. Lung transplantation (LT) remains an effective treatment for end-stage lung disease, but survival is limited after LT to over 7 years (US) and over 8 years (UK). Transition programs from pediatric to adult care for CF have improved outcomes, yet little is known about the transition from CF to LT care.
Methods: This is a parallel cross-sectional survey of CF providers in accredited CF centers in the US and specialist CF centers in the UK. The survey explores CF center experience with LT, transition practices for patients needing LT, and communication between CF and LT teams.
Results: 92/122 (75.4%) US CF centers and 26/28 (93%) UK specialist adult centers and several pediatric centers answered the survey. 206 surveys (US) and 114 surveys (UK) were completed. Half of respondents in the US and UK have over 10 years of experience in CF care. 36.4% in the US and 39.7% in the UK have a LT program associated with their center. In both countries, only 69.4% (US) and 67.5% (UK) of CF teams meet formally to discuss patients who may require LT, and in addition, 40.4% (US) and 46.8% (UK) hold these meetings on an “as needed” basis. Most CF teams provide education and assess patient understanding of LT, but only 46.1% (US) and 54.4% (UK) have a visit focused on LT, and only 20.9% (US) and 12.3% (UK) have a member of the LT team at that visit. Most centers in the US (77.3%) and in the UK (79.8%) reported a dedicated LT team meeting, but only 20.3% (US) and 21.1% (UK) have a CF caregiver present at this meeting. Respondents in both the US and UK reported concern that patients were discussed too late (21.8% vs. 21.9%), referred too late (19.3% vs. 18.4%), became too sick to refer (29.7% vs. 14.0%), and were impacted negatively due to timing (36.6% vs. 28.7%).
Conclusion: There is no standardized process for coordinating care from CF to LT in both the US and UK; responses from CF caregivers demonstrate a wide variation in practice. Further work is needed to develop best practice guidance in this highly complex transition process to help improve outcomes for individuals with CF who undergo LT.
Author Block: C. A. Merlo1, C. J. Francis2, N. D. Medhurst2, A. L. Thaxton1, E. Tallarico3, R. Cosgriff2, R. Dunk4, K. G. Brownlee2, J. S. Elborn4, E. L. Bush5, P. M. Shah1, N. E. West1; 1Medicine/ Pulmonary and Critical Care, Johns Hopkins, Baltimore, MD, United States, 2Cystic Fibrosis Trust, London, United Kingdom, 3Cystic Fibrosis Foundation, Bethesda, MD, United States, 4Royal Brompton, London, United Kingdom, 5Surgery/ Thoracic Surgery, Johns Hopkins, Baltimore, MD, United States.
Rationale: Therapeutic advances in cystic fibrosis (CF) have increased median predicted survival to 47 years in the United States (US) and United Kingdom (UK), yet many individuals with CF develop progressive disease. Lung transplantation (LT) remains an effective treatment for end-stage lung disease, but survival is limited after LT to over 7 years (US) and over 8 years (UK). Transition programs from pediatric to adult care for CF have improved outcomes, yet little is known about the transition from CF to LT care.
Methods: This is a parallel cross-sectional survey of CF providers in accredited CF centers in the US and specialist CF centers in the UK. The survey explores CF center experience with LT, transition practices for patients needing LT, and communication between CF and LT teams.
Results: 92/122 (75.4%) US CF centers and 26/28 (93%) UK specialist adult centers and several pediatric centers answered the survey. 206 surveys (US) and 114 surveys (UK) were completed. Half of respondents in the US and UK have over 10 years of experience in CF care. 36.4% in the US and 39.7% in the UK have a LT program associated with their center. In both countries, only 69.4% (US) and 67.5% (UK) of CF teams meet formally to discuss patients who may require LT, and in addition, 40.4% (US) and 46.8% (UK) hold these meetings on an “as needed” basis. Most CF teams provide education and assess patient understanding of LT, but only 46.1% (US) and 54.4% (UK) have a visit focused on LT, and only 20.9% (US) and 12.3% (UK) have a member of the LT team at that visit. Most centers in the US (77.3%) and in the UK (79.8%) reported a dedicated LT team meeting, but only 20.3% (US) and 21.1% (UK) have a CF caregiver present at this meeting. Respondents in both the US and UK reported concern that patients were discussed too late (21.8% vs. 21.9%), referred too late (19.3% vs. 18.4%), became too sick to refer (29.7% vs. 14.0%), and were impacted negatively due to timing (36.6% vs. 28.7%).
Conclusion: There is no standardized process for coordinating care from CF to LT in both the US and UK; responses from CF caregivers demonstrate a wide variation in practice. Further work is needed to develop best practice guidance in this highly complex transition process to help improve outcomes for individuals with CF who undergo LT.
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