Patient perspectives on elexacaftor/tezacaftor/ivacaftor after lung transplant

• Published in: Journal of cystic fibrosis 2024-05, Vol.23 (3), p.545-548
• Main Authors: Young, Dave, Bartlett, Lauren E., Guimbellot, Jennifer, Milinic, Tijana, Burdis, Nora, Gill, Eliana R., Lease, Erika D., Goss, Christopher H., Kapnadak, Siddhartha G., Ramos, Kathleen J.
• Format: Article
• Language: English
• ISSN: 1569-1993; 1873-5010; 1873-5010
• DOI: 10.1016/j.jcf.2023.09.017

•We surveyed lung transplant recipients’ perspectives on ETI use after transplant.•Over 80 % of respondents said treating non-pulmonary CF symptoms is very important.•Two-thirds felt comfortable with taking ETI based on their current knowledge.•Concerns included potential drug interactions, side effects, and cost of ETI. Cystic fibrosis transmembrane conductance regulator (CFTR) modulators, including elexacaftor/tezacaftor/ivacaftor (ETI), significantly improve outcomes and quality of life for people with cystic fibrosis (CF). However, little is known about how lung transplant recipients (LTRs) perceive the use of ETI. We conducted a survey to assess perspectives on ETI among LTRs with CF at our lung transplant program. Of 81 CF LTRs, 46 participants (58 %) responded. The majority of respondents (88 %) were aware of ETI. Over 80 % considered treating non-lung symptoms of CF to be very important. Concerns regarding ETI included potential drug interactions with transplant medications (77 %), side effects (53 %), cost of medication (49 %), and lack of clinical trial data for LTRs (43 %). Half reported they would only consider taking ETI if their CF or transplant doctor recommended it. The findings suggest that CF LTRs seek informational support and shared decision-making about ETI from their clinicians.