ArticleJournal of cystic fibrosis : official journal of the European Cystic Fibrosis Society2021
Design and methods for understanding the state of cystic fibrosis care amid the COVID-19 pandemic.
Article in Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
12 citing papers in PubMed.
- Reporting of Telehealth Implementation in Cystic Fibrosis: Scoping Review Using a Novel Theory-Based Evaluation Lens.Journal of medical Internet research · 2026Article
- The Role of Psychological Interventions in Enhancing Quality of Life for Patients with Cystic Fibrosis-A Systematic Review.Healthcare (Basel, Switzerland) · 2025Review
- The Long-Term Uptake of Home Spirometry in Regular Cystic Fibrosis Care: Retrospective Multicenter Observational Study.Journal of medical Internet research · 2025Observational
- Establishing a Cystic Fibrosis Learning Network: Interventions to promote collaboration and data-driven improvement at scale.Learning health systems · 2023Article
- Screening for Cystic Fibrosis Related Complications in the Context of a Pandemic and Altered Models of Care.Health services insights · 2023Article
- The Impact of COVID-19 in Cystic Fibrosis.Archivos de bronconeumologia · 2022Article
- A year in review: Real world evidence, functional monitoring and emerging therapeutics in 2021.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2022Review
- Financial impacts of the COVID-19 pandemic on cystic fibrosis care: lessons for the future.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2021Article
- Evaluating barriers to and promoters of telehealth during the COVID-19 pandemic at U.S. cystic fibrosis programs.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2021Article
- Telehealth use in cystic fibrosis during COVID-19: Association with race, ethnicity, and socioeconomic factors.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2021Article
- Patient and family experience of telehealth care delivery as part of the CF chronic care model early in the COVID-19 pandemic.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2021Article
- Barriers and facilitators to implementing telehealth services during the COVID-19 pandemic: A qualitative analysis of interviews with cystic fibrosis care team members.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2021Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundNovel therapies have dramatically changed cystic fibrosis (CF) and innovative care delivery systems are needed to meet future patient needs. Telehealth has been shown to be an efficient and desirable form of care delivery. The COVID-19 pandemic caused a rapid shift to telehealth, and this presented a unique opportunity to study facilitators, barriers, and satisfaction with this mode of care delivery. We aim to report survey methods, demographics and telehealth use among CF care programs, patients, and families during the pandemic.
methodsCF programs completed two surveys between July 29 and September 18, 2020, and between April 19 and May 19, 2021. Patients and families completed a similar survey between August 31 and October 30, 2020. The surveys addressed topics assessing the pandemic's financial impact, telehealth modes and experiences, licensure and reimbursement issues, health screening, and remote monitoring. Quantitative data were analyzed with descriptive statistics and were compared to the CF Foundation Patient Registry.
resultsMost programs (278 at timepoint one and 274 at timepoint two) provided telehealth during the pandemic. The percent of visits containing either telephone or video components changed from 45% to 25% over the time periods. Additionally, 424 patients and families from various ages and backgrounds responded to the survey and 81% reported having a telehealth visit.
conclusionsThe pandemic accelerated telehealth adoption and these datasets are a valuable source for exploring telehealth barriers and facilitators, the quality-of-care experience, financial and workforce implications, the impact on underrepresented populations, and implications for coverage and reimbursement.
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