Department of Biology, University of Washington, Seattle, WA 98195, United States.
Division of Pulmonary, Critical Care, and Sleep Medicine, Department of Medicine, University of Washington, Seattle, WA 98195, United States.
J Cyst Fibros. 2024 May;23(3):545-548. doi: 10.1016/j.jcf.2023.09.017. Epub 2023 Oct 3.
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.
囊性纤维化跨膜电导调节因子(CFTR)调节剂,包括依伐卡托/泰它卡托/维利卡托(ETI),可显著改善囊性纤维化(CF)患者的预后和生活质量。然而,对于肺移植受者(LTR)对 ETI 的看法,人们知之甚少。我们在肺移植项目中对 CF 肺移植受者进行了一项调查,以评估他们对 ETI 的看法。在 81 名 CF LTR 中,有 46 名参与者(58%)做出了回应。大多数受访者(88%)都知道 ETI。超过 80%的人认为治疗 CF 的非肺部症状非常重要。对 ETI 的担忧包括与移植药物的潜在药物相互作用(77%)、副作用(53%)、药物费用(49%)以及缺乏 LTR 的临床试验数据(43%)。一半的人表示,只有在他们的 CF 或移植医生建议使用 ETI 的情况下,他们才会考虑使用 ETI。研究结果表明,CF LTR 希望从临床医生那里获得有关 ETI 的信息支持和共同决策。