Basile Melissa, Polo Jennifer, Henthorne Katherine, DeCelie-Germana Joan, Galvin Susan, Wang Janice
Institute of Health System Science, Feinstein Institutes for Medical Research, Northwell Health, 600 Community Drive, Suite 403, Great Neck, NY 11021, USA.
Prevention Program, Institute of Health System Science, Feinstein Institutes for Medical Research, Great Neck, NY, USA.
Ther Adv Chronic Dis. 2024 Jul 30;15:20406223241264477. doi: 10.1177/20406223241264477. eCollection 2024.
Elexacaftor/tezacaftor/ivacaftor (ETI) has reduced many symptoms of cystic fibrosis (CF).
We sought to identify the impact of ETI on both symptoms and treatment decisions among adults with CF.
Participants were enrolled in a cross-sectional study. Surveys were sent a RedCap link. Semistructured interviews were administered remotely Microsoft Teams. Interviews were audio recorded and professionally transcribed.
We assessed Cystic Fibrosis Questionnaire-Revised (CFQ-R) subscales for physical, respiratory, emotion, and treatment, and analyzed semistructured interviews covering CF treatment regimens and daily living. Quantitative and qualitative results were analyzed separately and via a mixed-methods convergence coding matrix.
Twenty-four adults with CF taking ETI were included. CFQ-R subscale scores (mean scores/standard deviation) were physical (82.1/22.8), respiratory (83.7/11.2), emotion (65.3/14.2), and treatment (57.5/20.1). Three themes about decision-making for non-ETI-treatments emerged: (1) How I'm feeling, (2) Not noticing a difference, and (3) Uncertainty about long-term impact of modifying treatment regimens, and we found participants weighed each of these factors in their treatment decisions. Key findings from mixed-methods analysis show that among individuals experiencing higher CFQ-R scores for physical and respiratory compared to emotion and treatment, there were statements indicating that while those participants were experiencing better physical health, many continued their burdensome treatment regimens.
With little long-term data on the impact of reducing non-ETI treatments, participants weighed how they were feeling, treatment efficacy beliefs, and risk tolerance when making treatment decisions.
依列卡福妥/替扎卡福妥/依伐卡托（ETI）减轻了囊性纤维化（CF）的许多症状。
我们试图确定ETI对成年CF患者症状和治疗决策的影响。
参与者纳入一项横断面研究。通过RedCap链接发送调查问卷。通过Microsoft Teams进行远程半结构化访谈。访谈进行录音并专业转录。
我们评估了囊性纤维化问卷修订版（CFQ-R）在身体、呼吸、情绪和治疗方面的分量表，并分析了涵盖CF治疗方案和日常生活的半结构化访谈。定量和定性结果分别进行分析，并通过混合方法收敛编码矩阵进行分析。
纳入了24名服用ETI的成年CF患者。CFQ-R分量表得分（平均分/标准差）分别为：身体（82.1/22.8）、呼吸（83.7/11.2）、情绪（65.3/14.2）和治疗（57.5/20.1）。出现了关于非ETI治疗决策的三个主题：（1）我的感受如何，（2）未察觉到差异，（3）对改变治疗方案的长期影响存在不确定性，并且我们发现参与者在治疗决策中权衡了这些因素。混合方法分析的主要发现表明，与情绪和治疗方面相比，在身体和呼吸方面CFQ-R得分较高的个体中，有陈述表明，虽然这些参与者身体健康状况有所改善，但许多人仍继续采用繁重的治疗方案。
由于关于减少非ETI治疗影响的长期数据较少，参与者在做出治疗决策时权衡了他们的感受、对治疗效果的信念和风险承受能力。
