Care following a lung transplant

Peter Barry, chair of the CFMA and Andrew Fisher of the ALTP, said "We are delighted to see the publication of a joint statement on the care of people with CF following a lung transplant. This highlights the ongoing collaborative work between the UK CF Medical Association and the UK Association of Lung Transplant Physicians, with the input of people with CF who have had a lung transplant. 

The statement highlights that the ongoing management of the multi-system aspects of CF post lung transplant is a priority for medical teams and should outline clear pathways for the delivery of this care for people with CF with or being considered for a lung transplant."

To support high quality care for people with CF post lung transplantation, the UKCFMA and ALTP recommends that:

1. People with CF, who have received a transplant should continue to be included on the UK CF Registry (with their consent).
    

2. People with CF should have a clear picture of their care pathway following transplant, including clear lines of communication and responsibility. 
    

3. As outlined in the revised UK standards of care, there should be a clear written shared care framework, either on a person-by-person basis, or on an interservice level, which details which conditions/areas of care are the primary responsibility of which team. The responsibility to care for specific issues (for example, but not limited to, GI disease, CF related diabetes, CF liver disease, bone health, renal issues and mental health) should be the responsibility of one team and this should be communicated to the person with CF and their primary care team. CF teams will be in the best position to care for certain complications. Close communication should occur between the CF team and the transplant team to ensure continuity of care. A locally agreed structured framework or checklist may facilitate this.
    

4. Due to the complexity of post-transplant immunosuppression, all lung complications should be managed or directed by lung transplant specialists, and all people with CF must be offered regular ongoing care from a specialist lung transplantation centre. 
    

5. After lung transplantation, all people with CF should be offered ongoing review by a specialist CF team at least yearly and have appropriate annual investigations conducted as per standards of care.
    

6. Teams should be aware of the (US-based Cystic Fibrosis Foundation) bowel screening recommendations for people with CF post solid organ transplantation. The responsibility for implementing these recommendations should be the responsibility of one care giving team agreed in advance and will usually be the CF team.
    

7. There should be timely access to opinions from CF experts for the lung transplant team and vice versa.
    

8. People who have had a lung transplant must have equity of access to specialist cystic fibrosis care including psychosocial professionals, as stated in the RightCare cystic fibrosis toolkit.
    

9. Decisions regarding the use of CFTR modulator therapy post lung transplant should be made jointly though shared decision-making between the transplant team, the CF team and the person with CF. 
    

10. For people with CF who received a lung transplant during childhood or adolescence, a clear, appropriate transition plan to adult transplant and CF care teams should be planned and implemented, with clear communication regarding clinical responsibilities during periods of transition. Transition should be viewed as a planned process rather than a single transfer event.
     

11. All people with CF should have access to palliative care consistent with standards of care recommendations. 

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