Meeting Cystic Fibrosis Patient Needs in Transition to Lung Transplant

Abstract

The care of the patient with cystic fibrosis (CF) requires a multidisciplinary approach throughout the lifespan by teams specially trained to deal with the complexities of care. Improvements in therapies have resulted in increased life expectancy of those with CF, yet respiratory failure continues to be the leading cause of death. While lung transplant (LTx) can be a viable treatment option, 35% of CF patients who meet criteria are not referred. We sought to understand patient preferences regarding discussions surrounding LTx in anticipation of referral to the LTx center. A cross-sectional survey was developed to understand the patient's perspective on LTx transition. The survey was sent, via MyChart, to a retrospective cohort of CF patients who were seen as a new patient in the LTx center over a two-year period, and we provided the survey at the end of initial LTx clinic encounter. Patients representing eight CF centers participated. All respondents identified the CF pulmonologist as discussing LTx (N=17). 52% of patients also discussed Ltx with another member of the CF team (Figure 1). Conversely 88% of respondents wanted to hear about LTx from members of the team other than their physician. In fact 35% of respondents did not select the pulmonologist as someone they felt comfortable speaking to regarding LTx. Due to the success of the multidisciplinary approach in CF clinics, patients often prefer to discuss treatment options with a variety of clinicians. The decision to refer to LTx can be overwhelming for the patient and the CF team, who may lack comfort in discussing LTx. The responses reflecting multiple CF programs suggests this problem is not center-specific, but relevant across CF centers.