The feasibility of home monitoring of young people with cystic fibrosis: Results from CLIMB-CF

C. Edmondson; N. Westrupp; P. Seddon; C. Olden; C. Wallis; C. Dawson; M. Brodlie; F. Baxter; J. McCormick; S. MacFarlane; D. Rice; A. Macleod; R. Brooker; M. Connon; S. Ghayyda; L. Blaikie; R. Thursfield; L. Brown; A. Price; E. Fleischer; J. Itterman; D. Hughes; P. Barrett; M. Surette; C. Donnelly; D. Mateos-Corral; G. Padley; J. Wallenburg; K. Brownlee; E. W. F. W. Alton; A. Bush; J. C. Davies

doi:10.1016/j.jcf.2021.09.018

The feasibility of home monitoring of young people with cystic fibrosis: Results from CLIMB-CF

C. Edmondson (Lead / Corresponding author), N. Westrupp, P. Seddon, C. Olden, C. Wallis, C. Dawson, M. Brodlie, F. Baxter, J. McCormick, S. MacFarlane, D. Rice, A. Macleod, R. Brooker, M. Connon, S. Ghayyda, L. Blaikie, R. Thursfield, L. Brown, A. Price, E. FleischerJ. Itterman, D. Hughes, P. Barrett, M. Surette, C. Donnelly, D. Mateos-Corral, G. Padley, J. Wallenburg, K. Brownlee, E. W. F. W. Alton, A. Bush, J. C. Davies

Undergraduate Medicine

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22 Citations (Scopus)

Abstract

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.

Original language	English
Pages (from-to)	70-77
Number of pages	8
Journal	Journal of Cystic Fibrosis
Volume	21
Issue number	1
Early online date	8 Oct 2021
DOIs	https://doi.org/10.1016/j.jcf.2021.09.018
Publication status	Published - 1 Jan 2022

Keywords

Anxiety
Depression
Digital technology
Feasibility
Home monitoring

ASJC Scopus subject areas

Pediatrics, Perinatology, and Child Health
Pulmonary and Respiratory Medicine

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Edmondson, C., Westrupp, N., Seddon, P., Olden, C., Wallis, C., Dawson, C., Brodlie, M., Baxter, F., McCormick, J., MacFarlane, S., Rice, D., Macleod, A., Brooker, R., Connon, M., Ghayyda, S., Blaikie, L., Thursfield, R., Brown, L., Price, A., ... Davies, J. C. (2022). The feasibility of home monitoring of young people with cystic fibrosis: Results from CLIMB-CF. Journal of Cystic Fibrosis, 21(1), 70-77. https://doi.org/10.1016/j.jcf.2021.09.018

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title = "The feasibility of home monitoring of young people with cystic fibrosis: Results from CLIMB-CF",

abstract = "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.",

keywords = "Anxiety, Depression, Digital technology, Feasibility, Home monitoring",

author = "C. Edmondson and N. Westrupp and P. Seddon and C. Olden and C. Wallis and C. Dawson and M. Brodlie and F. Baxter and J. McCormick and S. MacFarlane and D. Rice and A. Macleod and R. Brooker and M. Connon and S. Ghayyda and L. Blaikie and R. Thursfield and L. Brown and A. Price and E. Fleischer and J. Itterman and D. Hughes and P. Barrett and M. Surette and C. Donnelly and D. Mateos-Corral and G. Padley and J. Wallenburg and K. Brownlee and Alton, {E. W. F. W.} and A. Bush and Davies, {J. C.}",

note = "Funding Information: MB reports not related to this work Investigator led research grants from Pfizer and Roche Diagnostics. Institutional fees from Roche Diagnostics and TEVA. Travel expenses from Boehringer Ingelheim and Vertex pharmaceuticals. Funding Information: Funding for the project was received from the Cystic Fibrosis Trust and Cystic Fibrosis Canada. CE also received funding from an NIHR Rare Diseases Translational Research Collaboration Fellowship Publisher Copyright: {\textcopyright} 2021",

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doi = "10.1016/j.jcf.2021.09.018",

language = "English",

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journal = "Journal of Cystic Fibrosis",

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Edmondson, C, Westrupp, N, Seddon, P, Olden, C, Wallis, C, Dawson, C, Brodlie, M, Baxter, F, McCormick, J, MacFarlane, S, Rice, D, Macleod, A, Brooker, R, Connon, M, Ghayyda, S, Blaikie, L, Thursfield, R, Brown, L, Price, A, Fleischer, E, Itterman, J, Hughes, D, Barrett, P, Surette, M, Donnelly, C, Mateos-Corral, D, Padley, G, Wallenburg, J, Brownlee, K, Alton, EWFW, Bush, A & Davies, JC 2022, 'The feasibility of home monitoring of young people with cystic fibrosis: Results from CLIMB-CF', Journal of Cystic Fibrosis, vol. 21, no. 1, pp. 70-77. https://doi.org/10.1016/j.jcf.2021.09.018

TY - JOUR

T1 - The feasibility of home monitoring of young people with cystic fibrosis

T2 - Results from CLIMB-CF

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, E. W. F. W.

AU - Bush, A.

AU - Davies, J. C.

N1 - Funding Information: MB reports not related to this work Investigator led research grants from Pfizer and Roche Diagnostics. Institutional fees from Roche Diagnostics and TEVA. Travel expenses from Boehringer Ingelheim and Vertex pharmaceuticals. Funding Information: Funding for the project was received from the Cystic Fibrosis Trust and Cystic Fibrosis Canada. CE also received funding from an NIHR Rare Diseases Translational Research Collaboration Fellowship Publisher Copyright: © 2021

PY - 2022/1/1

Y1 - 2022/1/1

N2 - 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.

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.

KW - Anxiety

KW - Depression

KW - Digital technology

KW - Feasibility

KW - Home monitoring

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U2 - 10.1016/j.jcf.2021.09.018

DO - 10.1016/j.jcf.2021.09.018

M3 - Article

C2 - 34635459

SN - 1569-1993

VL - 21

SP - 70

EP - 77

JO - Journal of Cystic Fibrosis

JF - Journal of Cystic Fibrosis

IS - 1

ER -

The feasibility of home monitoring of young people with cystic fibrosis: Results from CLIMB-CF

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Keywords

ASJC Scopus subject areas

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