PDF(Pubmed)
Abstract：
UNASSIGNED: Elexacaftor/tezacaftor/ivacaftor (ETI) has reduced many symptoms of cystic fibrosis (CF).
UNASSIGNED: We sought to identify the impact of ETI on both symptoms and treatment decisions among adults with CF.
UNASSIGNED: Participants were enrolled in a cross-sectional study. Surveys were sent via a RedCap link. Semistructured interviews were administered remotely via Microsoft Teams. Interviews were audio recorded and professionally transcribed.
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.
The impact of Trikafta on CF health, health-related quality of life, and treatment adherence People with cystic fibrosis may be experiencing many health benefits from taking Trikafta, leading some people to cut back on or stop their other non-Trikafta treatments. We explored the impact of Trikafta on CF health, health-related quality of life, and treatment adherence for people with CF currently taking Trikafta. We compared health-related quality of life subscales from the CF Questionnaire-Revised questionnaire focused on physical symptoms, respiratory symptoms, treatment burden, and emotional well-being to assess whether people with CF were experiencing improved physical and respiratory health compared to emotional health and feelings of treatment burden. We found that many people were feeling better physically, but were still experiencing poor mental health and high treatment burden. We then looked at results from open-ended interviews to see if our qualitative data could explain the differences in the health-related quality of life scores. We found that while people were feeling better physically, many people were still continuing with the pre-Trikafta treatment regimens which may explain why physical health and respiratory health scores were higher than emotional well-being and treatment burden scores. At this time, we believe that more research is needed to guide treatment decisions related to cutting back or stopping burdensome treatment regimens.
UNASSIGNED: We sought to identify the impact of ETI on both symptoms and treatment decisions among adults with CF.
UNASSIGNED: Participants were enrolled in a cross-sectional study. Surveys were sent via a RedCap link. Semistructured interviews were administered remotely via Microsoft Teams. Interviews were audio recorded and professionally transcribed.
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.
The impact of Trikafta on CF health, health-related quality of life, and treatment adherence People with cystic fibrosis may be experiencing many health benefits from taking Trikafta, leading some people to cut back on or stop their other non-Trikafta treatments. We explored the impact of Trikafta on CF health, health-related quality of life, and treatment adherence for people with CF currently taking Trikafta. We compared health-related quality of life subscales from the CF Questionnaire-Revised questionnaire focused on physical symptoms, respiratory symptoms, treatment burden, and emotional well-being to assess whether people with CF were experiencing improved physical and respiratory health compared to emotional health and feelings of treatment burden. We found that many people were feeling better physically, but were still experiencing poor mental health and high treatment burden. We then looked at results from open-ended interviews to see if our qualitative data could explain the differences in the health-related quality of life scores. We found that while people were feeling better physically, many people were still continuing with the pre-Trikafta treatment regimens which may explain why physical health and respiratory health scores were higher than emotional well-being and treatment burden scores. At this time, we believe that more research is needed to guide treatment decisions related to cutting back or stopping burdensome treatment regimens.
摘要：
■Elexacaftor/tezacaftor/ivacaftor（ETI）减轻了囊性纤维化（CF）的许多症状。
■我们试图确定ETI对CF成人症状和治疗决定的影响。
■参与者参加了一项横断面研究。调查是通过RedCap链接发送的。半结构化访谈是通过MicrosoftTeams进行远程管理的。访谈是录音和专业转录的。
■我们评估了囊性纤维化问卷修订（CFQ-R）分量表的身体，呼吸,情感，和治疗,并分析了涵盖CF治疗方案和日常生活的半结构化访谈。通过混合方法收敛编码矩阵分别分析了定量和定性结果。
■包括24名服用ETI的CF成年人。CFQ-R子量表得分（平均得分/标准偏差）为物理（82.1/22.8），呼吸（83.7/11.2），情感（65.3/14.2），和治疗（57.5/20.1）。关于非ETI治疗决策的三个主题出现了：(1)我的感受，（2）没有注意到差异，(3)修改治疗方案的长期影响的不确定性，我们发现参与者在他们的治疗决定中权衡了这些因素中的每一个。混合方法分析的主要发现表明，与情绪和治疗相比，在身体和呼吸方面的CFQ-R得分更高的个体中，有声明表明，虽然这些参与者的身体健康状况更好，许多人继续他们繁重的治疗方案。
■关于减少非ETI治疗的影响的长期数据很少，参与者权衡了他们的感受，治疗功效信念，以及在做出治疗决定时的风险承受能力。
Trikafta对CF健康的影响，与健康相关的生活质量，和治疗依从性囊性纤维化患者服用Trikafta可能会带来许多健康益处，导致一些人减少或停止其他非Trikafta治疗。我们探讨了Trikafta对CF健康的影响，与健康相关的生活质量，以及目前服用Trikafta的CF患者的治疗依从性。我们比较了CF问卷修订后的关注身体症状的健康相关生活质量分量表，呼吸道症状,治疗负担,和情绪健康，以评估CF患者与情绪健康和治疗负担感相比，身体和呼吸健康是否有所改善。我们发现许多人的身体感觉更好，但仍然经历着不良的心理健康和高的治疗负担。然后，我们查看了开放式访谈的结果，看看我们的定性数据是否可以解释与健康相关的生活质量评分的差异。我们发现，虽然人们的身体感觉更好，许多人仍在继续使用Trikafta前期治疗方案,这可以解释为什么身体健康和呼吸健康评分高于情绪健康和治疗负担评分.此时,我们认为需要更多的研究来指导与削减或停止繁重的治疗方案相关的治疗决策.
■我们试图确定ETI对CF成人症状和治疗决定的影响。
■参与者参加了一项横断面研究。调查是通过RedCap链接发送的。半结构化访谈是通过MicrosoftTeams进行远程管理的。访谈是录音和专业转录的。
■我们评估了囊性纤维化问卷修订（CFQ-R）分量表的身体，呼吸,情感，和治疗,并分析了涵盖CF治疗方案和日常生活的半结构化访谈。通过混合方法收敛编码矩阵分别分析了定量和定性结果。
■包括24名服用ETI的CF成年人。CFQ-R子量表得分（平均得分/标准偏差）为物理（82.1/22.8），呼吸（83.7/11.2），情感（65.3/14.2），和治疗（57.5/20.1）。关于非ETI治疗决策的三个主题出现了：(1)我的感受，（2）没有注意到差异，(3)修改治疗方案的长期影响的不确定性，我们发现参与者在他们的治疗决定中权衡了这些因素中的每一个。混合方法分析的主要发现表明，与情绪和治疗相比，在身体和呼吸方面的CFQ-R得分更高的个体中，有声明表明，虽然这些参与者的身体健康状况更好，许多人继续他们繁重的治疗方案。
■关于减少非ETI治疗的影响的长期数据很少，参与者权衡了他们的感受，治疗功效信念，以及在做出治疗决定时的风险承受能力。
Trikafta对CF健康的影响，与健康相关的生活质量，和治疗依从性囊性纤维化患者服用Trikafta可能会带来许多健康益处，导致一些人减少或停止其他非Trikafta治疗。我们探讨了Trikafta对CF健康的影响，与健康相关的生活质量，以及目前服用Trikafta的CF患者的治疗依从性。我们比较了CF问卷修订后的关注身体症状的健康相关生活质量分量表，呼吸道症状,治疗负担,和情绪健康，以评估CF患者与情绪健康和治疗负担感相比，身体和呼吸健康是否有所改善。我们发现许多人的身体感觉更好，但仍然经历着不良的心理健康和高的治疗负担。然后，我们查看了开放式访谈的结果，看看我们的定性数据是否可以解释与健康相关的生活质量评分的差异。我们发现，虽然人们的身体感觉更好，许多人仍在继续使用Trikafta前期治疗方案,这可以解释为什么身体健康和呼吸健康评分高于情绪健康和治疗负担评分.此时,我们认为需要更多的研究来指导与削减或停止繁重的治疗方案相关的治疗决策.
