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@article{Edmondson:2022:10.1016/j.jcf.2021.09.018,
author = {Edmondson, C and Westrupp, N and Seddon, P and Olden, C and Wallis, C and Dawson, C and Brodlie, M and Baxter, F and McCormick, J and MacFarlane, S and Rice, D and Macleod, A and Brooker, R and Connon, M and Ghayyda, S and Blaikie, L and Thursfield, R and Brown, L and Price, A and Fleischer, E and Itterman, J and Hughes, D and Barrett, P and Surette, M and Donnelly, C and Mateos-Corral, D and Padley, G and Wallenburg, J and Brownlee, K and Alton, EWFW and Bush, A and Davies, JC},
doi = {10.1016/j.jcf.2021.09.018},
journal = {Journal of Cystic Fibrosis},
pages = {70--77},
title = {The feasibility of home monitoring of young people with cystic fibrosis: results from CLIMB-CF},
url = {http://dx.doi.org/10.1016/j.jcf.2021.09.018},
volume = {21},
year = {2022}
}

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TY  - JOUR
AB  - BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.
AU  - Edmondson,C
AU  - Westrupp,N
AU  - Seddon,P
AU  - Olden,C
AU  - Wallis,C
AU  - Dawson,C
AU  - Brodlie,M
AU  - Baxter,F
AU  - McCormick,J
AU  - MacFarlane,S
AU  - Rice,D
AU  - Macleod,A
AU  - Brooker,R
AU  - Connon,M
AU  - Ghayyda,S
AU  - Blaikie,L
AU  - Thursfield,R
AU  - Brown,L
AU  - Price,A
AU  - Fleischer,E
AU  - Itterman,J
AU  - Hughes,D
AU  - Barrett,P
AU  - Surette,M
AU  - Donnelly,C
AU  - Mateos-Corral,D
AU  - Padley,G
AU  - Wallenburg,J
AU  - Brownlee,K
AU  - Alton,EWFW
AU  - Bush,A
AU  - Davies,JC
DO  - 10.1016/j.jcf.2021.09.018
EP  - 77
PY  - 2022///
SN  - 1569-1993
SP  - 70
TI  - The feasibility of home monitoring of young people with cystic fibrosis: results from CLIMB-CF
T2  - Journal of Cystic Fibrosis
UR  - http://dx.doi.org/10.1016/j.jcf.2021.09.018
UR  - https://www.ncbi.nlm.nih.gov/pubmed/34635459
UR  - https://www.sciencedirect.com/science/article/pii/S1569199321014235?via%3Dihub
UR  - http://hdl.handle.net/10044/1/93556
VL  - 21
ER  -

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