Addressing lung transplant with adults with cystic fibrosis: A qualitative analysis of patients' perspectives and experiences

Referral for lung transplantation is a complex process that typically begins with a discussion in cystic fibrosis (CF) clinic. We performed a secondary analysis of interviews conducted at the University of Washington CF Clinic as part of a study of unmet palliative care needs, June 2015 – January 2016, among adults with moderate-to-severe CF-related lung disease. Content analysis methods were used to identify themes related to discussion of lung transplant in CF clinic. Thirty-two of 48 interviews (67%) addressed transplant. An individual's willingness to discuss transplant was not necessarily related to the degree of lung function impairment. Patients reported reliance on CF physicians as a source of accurate information about transplant. Individuals with CF sometimes reported feeling too old or not worthy of transplant. Many had apprehensive or ambivalent feelings towards transplant. Patient-identified barriers and facilitators to lung transplant discussions can inform physicians as they discuss transplant in CF clinic.