The feasibility of home monitoring of young people with cystic fibrosis: results from CLIMB-CF
Open accessAbstract
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.
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In the CLIMB-CF study, by month two of the six-month study, adherence dropped from >50% to 20%.
“While there was no negative impact on the lives of the patients/families, the adoption of the app was variable and by month two of the six month study, study adherence had dropped from >50% to 20%, demonstrating that it was not sustained over time (17).”
From Virtual monitoring in CF – the importance of continuous monitoring in a multi-organ chronic condition (2023) · cites this paper as [17]
In the CLIMB-CF study, the app-based monitoring was not sustained over time.
“While there was no negative impact on the lives of the patients/families, the adoption of the app was variable and by month two of the six month study, study adherence had dropped from >50% to 20%, demonstrating that it was not sustained over time (17).”
From Virtual monitoring in CF – the importance of continuous monitoring in a multi-organ chronic condition (2023) · cites this paper as [17]
In the CLIMB-CF study, there was no negative impact on the lives of patients/families.
“While there was no negative impact on the lives of the patients/families, the adoption of the app was variable and by month two of the six month study, study adherence had dropped from >50% to 20%, demonstrating that it was not sustained over time (17).”
From Virtual monitoring in CF – the importance of continuous monitoring in a multi-organ chronic condition (2023) · cites this paper as [17]
In the CLIMB-CF study, adoption of the app was variable.
“While there was no negative impact on the lives of the patients/families, the adoption of the app was variable and by month two of the six month study, study adherence had dropped from >50% to 20%, demonstrating that it was not sustained over time (17).”
From Virtual monitoring in CF – the importance of continuous monitoring in a multi-organ chronic condition (2023) · cites this paper as [17]
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- Authors
- 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, E. W. F. W., Bush, A., & Davies, J. C.
- Affiliations
- Royal Brompton Hospital (GB)
- Royal Alexandra Children's Hospital (GB)
- Great Ormond Street Hospital (GB)
- Newcastle upon Tyne Hospitals NHS Foundation Trust (GB)
- Ninewells Hospital (GB)
- Royal Aberdeen Children's Hospital (GB)
- Raigmore Hospital (GB)
- Alder Hey Children's NHS Foundation Trust (GB)
- London Health Sciences Centre (CA)
- Izaak Walton Killam Health Centre (CA)
- Cystic Fibrosis Canada (CA)
- Cystic Fibrosis Trust (GB)
- Corresponding author
- Edmondson, C.
- ORCID
- Venue
- Journal of Cystic Fibrosis
- Publisher
- Elsevier BV
- Published
- 2022-01
- Volume
- 21
- Issue
- 1
- Pages
- 70-77
- ISSN
- 1569-1993 (ISSN-L)
- OpenAlex
- W3201773783
- Cited by
- 26
- References
- 28
- Citations by year
- 2026: 2 · 2025: 4 · 2024: 9 · 2023: 5 · 2022: 5 · 2021: 1
- FWCI
- 3.23
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- Locations
- Journal of Cystic Fibrosis (publishedVersion)
- PubMed (publishedVersion)
- Discovery Research Portal (University of Dundee) (submittedVersion)
- Spiral (Imperial College London) (submittedVersion, cc-by-nc-nd)
- Newcastle University ePrints (Newcastle Univesity)
- Funders
- National Institute for Health and Care Research (NIHR201402, NIHR203766, NF-SI-0616-10083)
- Medical Research Council (MR/M008797/1)
- Topics
- Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Cystic Fibrosis Research Advances
- Health Sciences › Health Professions › General Health Professions › Mobile Health and mHealth Applications
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Telemedicine and Telehealth Implementation
- Keywords
- home monitoring, youth, feasibility, acceptability, mobile application, data completeness, depression, anxiety, quality of life, parental mental health, adolescents
- MeSH terms
- COVID-19, SARS-CoV-2, Adolescent, Anxiety, Child, Child, Preschool, Cystic Fibrosis, Depression, Feasibility Studies, Female, Humans, Male, Monitoring, Physiologic, Quality of Life, Pandemics, Mobile Applications
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