NHLI, Imperial College London, UK; Royal Brompton Hospital, UK.
NHLI, Imperial College London, UK; Royal Brompton Hospital, UK.
J Cyst Fibros. 2022 Jan;21(1):70-77. doi: 10.1016/j.jcf.2021.09.018. Epub 2021 Oct 8.
CF is traditionally assessed in clinic. It is unclear if home monitoring of young people with CF is feasible or acceptable. The COVID-19 pandemic has made home monitoring more of a necessity. We report the results of CLIMB-CF, exploring home monitoring's feasibility and potential obstacles.
We designed a mobile app and enrolled participants with CF aged 2-17 years and their parents for six months. They were asked to complete a variety of measures either daily or twice a week. During the study, participants and their parents completed questionnaires exploring depression, anxiety and quality of life. At the end of the study parents and participants completed acceptability questionnaires.
148 participants were recruited, 4 withdrew prior to starting the study. 82 participants were female with median (IQR) age 7.9 (5.2-12 years). Median data completeness was 40.1% (13.6-69.9%) for the whole cohort; when assessed by age participants aged ≥ 12 years contributed significantly less (15.6% [9.8-30%]). Data completeness decreased over time. There was no significant difference between parental depression and anxiety scores at the start and the end of the study nor in CFQ-R respiratory domain scores for participants ≥ 14 years. The majority of participants did not feel the introduction of home monitoring impacted their daily lives.
Most participants felt home monitoring did not negatively impact their lives and it did not increase depression, anxiety or decrease quality of life. However, uptake was variable, and not well sustained. The teenage years pose a particular challenge and further work is required.
CF 传统上在临床中进行评估。目前尚不清楚对 CF 患者进行家庭监测是否可行或可接受。COVID-19 大流行使得家庭监测变得更加必要。我们报告了 CLIMB-CF 的结果，探索了家庭监测的可行性和潜在障碍。
我们设计了一个移动应用程序，并招募了年龄在 2-17 岁的 CF 患者及其父母作为参与者，为期六个月。他们被要求每天或每周两次完成各种测量。在研究过程中，参与者及其父母完成了抑郁、焦虑和生活质量的问卷。研究结束时，父母和参与者完成了可接受性问卷。
共招募了 148 名参与者，其中 4 名在开始研究前退出。82 名参与者为女性，中位（IQR）年龄为 7.9（5.2-12 岁）。整个队列的中位数据完整性为 40.1%（13.6-69.9%）；按年龄评估，≥12 岁的参与者贡献的数据明显较少（15.6%[9.8-30%]）。数据完整性随时间推移而降低。研究开始和结束时，父母的抑郁和焦虑评分以及≥14 岁参与者的 CFQ-R 呼吸域评分均无显著差异。大多数参与者认为家庭监测并未对其日常生活产生负面影响。
大多数参与者认为家庭监测不会对其生活产生负面影响，也不会增加抑郁、焦虑或降低生活质量。然而，参与度存在差异，且无法持续保持。青少年时期尤其具有挑战性，需要进一步研究。
