Altabee Rana, Carr Siobhan B, Abbott Janice, Cameron Rory, Office Daniel, Matthews Jessie, Simmonds Nicholas, Cosgriff Rebecca, Turner David, Whitty Jennifer
Health Economics Group, Norwich Medical School, University of East Anglia, Norwich, NR4 7TJ, UK.
College of Applied Medical Sciences, King Saud bin Abdulaziz University for Health Sciences, Jeddah, 22384, Saudi Arabia.
NIHR Open Res. 2022 May 9;2:36. doi: 10.3310/nihropenres.13260.1.
Despite the importance of reducing treatment burden for people with cystic fibrosis (CF), it has not been fully understood as a concept. This study aims to quantify the treatment burden perceived by CF adults and explore the association between different validated treatment burden measures.
This is a cross-sectional observational study of CF adults attending a single large UK adult center. Participants completed an online survey that contained three different treatment burden scales; CF Questionnaire-Revised (CFQ-R) subscale, CF Quality of Life (CFQoL) subscale, and the generic multimorbidity treatment burden questionnaire (MTBQ).
Among 101 participants, the median reported treatment burden by the CFQ-R subscale was 55.5 (IQR 33.3 - 66.6), the CFQoL subscale was 66.6 (IQR 46.6 - 86.6), and the MTBQ reversed global score was 84.6 (IQR 73.1 - 92.3). No correlation was found between respondents' demographic or clinical variables and treatment burden measured via any of the three measures. All treatment burden measures showed correlations against each other. More treatments were associated with high treatment burden as measured by the CFQ-R, CFQoL subscales, and the MTBQ. However, longer treatment time and more complex treatment plans were correlated with high treatment burden as measured by the CFQ-R and CFQoL subscales, but not with the MTBQ.
Treatment burden is a substantial issue in CF. Currently, the only available way to evaluate it is with the CF-specific quality of life measure treatment burden subscales (CFQ-R and CFQoL); both indicated that treatment burden increases with more treatments, longer treatment time, and more complex treatments.
尽管减轻囊性纤维化（CF）患者的治疗负担很重要，但这一概念尚未得到充分理解。本研究旨在量化成年CF患者感知到的治疗负担，并探讨不同有效治疗负担测量方法之间的关联。
这是一项对在英国一个大型成人中心就诊的成年CF患者进行的横断面观察性研究。参与者完成了一项在线调查，其中包含三种不同的治疗负担量表；囊性纤维化问卷修订版（CFQ-R）子量表、囊性纤维化生活质量（CFQoL）子量表和通用的多重疾病治疗负担问卷（MTBQ）。
在101名参与者中，CFQ-R子量表报告的治疗负担中位数为55.5（四分位间距33.3 - 66.6），CFQoL子量表为66.6（四分位间距46.6 - 86.6），MTBQ反向全球评分为84.6（四分位间距73.1 - 92.3）。在受访者的人口统计学或临床变量与通过这三种测量方法中的任何一种测量的治疗负担之间未发现相关性。所有治疗负担测量方法之间均显示出相关性。通过CFQ-R、CFQoL子量表和MTBQ测量，更多的治疗与高治疗负担相关。然而，通过CFQ-R和CFQoL子量表测量，更长的治疗时间和更复杂的治疗计划与高治疗负担相关，但与MTBQ无关。
治疗负担在CF中是一个重要问题。目前，评估它的唯一可用方法是使用特定于CF的生活质量测量治疗负担子量表（CFQ-R和CFQoL）；两者均表明治疗负担随着更多的治疗、更长的治疗时间和更复杂的治疗而增加。
