Table 1:

Explanation of terminology

Lung transplant referral	The act of sending a request and transmitting medical records to a lung transplant center to assess an individual’s candidacy for lung transplantation, usually through a clinic visit at the transplant center. In addition to the lung transplant assessment itself, the referral serves as an opportunity for the individual with cystic fibrosis (CF), their family, and the CF care team to gain access to the expert opinion of the lung transplant center. Depending on the situation and transplant program practices, it may result in a brief evaluation with a focus on education, discussion of potential barriers, or a complete evaluation.
Lung transplant evaluation	Consultation and diagnostic testing to assess disease severity and identify whether specific barriers to lung transplantation exist and whether those barriers are modifiable. The evaluation involves a comprehensive assessment of the individual’s medical condition and comorbidities, psychosocial situation, and financial/insurance resources.
Lung transplant listing	Placement on the lung transplant waitlist as an appropriate candidate for lung transplant to await a suitable donor. Listing is dependent on the completion of an evaluation, approval by a lung transplant selection committee, and insurance coverage for the transplant. A patient’s status on the list is fluid and can change based on disease severity or the development of contraindications after listing.
Early referral	Referral of an individual prior to the medical need for lung transplantation.
Timely referral	Referral of an individual with medical indications for lung transplantation, likely requiring listing, without an urgent indication for transplant (e.g. acute respiratory failure).
Late referral	Referral of an individual for transplant consideration when the individual is too sick to undergo routine transplant evaluation (e.g. emergent referral for an individual in acute respiratory failure). Late referral may lead to death without transplant because of inadequate time to proceed with listing or limited lung donor availability, or to poor post-transplant outcomes (e.g. increased post-operative morbidity/mortality) in the setting of severe pre-transplant illness.
Consultation with lung transplant center	Physician to physician conversation via phone, email or in-person about the individual with CF.
Communication between CF and lung transplant centers	Phone call, email, or medical record notes to the lung transplant team (MD, RN, social work, dietician, as indicated) from the CF care team and vice versa.