ArticleJournal of cystic fibrosis : official journal of the European Cystic Fibrosis Society2021
Patient and family experience of telehealth care delivery as part of the CF chronic care model early in 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. It is linked to trial NCT05462626 (Quality of Life and Occupational Performance in Community-Dwelling Older Adults), which is not on this map. Cited by 22 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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.
Quality of Life and Occupational Performance in Community-Dwelling Older Adults: a Telehealth Lifestyle Pilot
Who cites it
22 citing papers in PubMed, 41 citations in OpenAlex.
- Meaningful Criteria to Persons Living With Cystic Fibrosis and Their Healthcare Providers in Helping Determine Adjustments to Routine Clinical Follow-Up.Pediatric pulmonology · 2026Article
- Telehealth by Home Monitoring and Video Consultation for Children With Cystic Fibrosis: Qualitative and Quantitative Study.JMIR formative research · 2026Article
- Reporting of Telehealth Implementation in Cystic Fibrosis: Scoping Review Using a Novel Theory-Based Evaluation Lens.Journal of medical Internet research · 2026Article
- Home sputum collection forERJ open research · 2025Article
- Cystic Fibrosis Learning Network Telehealth Innovation Lab During the COVID-19 Pandemic: Impact on Access to Care, Outcomes, and a New CF Care Model.Pediatric pulmonology · 2025Article
- Acceptability of Telehealth Post-Pandemic Among Clinicians Across the United States Caring for People With Cystic Fibrosis.Pediatric pulmonology · 2025Article
- The Long-Term Uptake of Home Spirometry in Regular Cystic Fibrosis Care: Retrospective Multicenter Observational Study.Journal of medical Internet research · 2025Observational
- Article
- "I eat chocolate milk for dinner because we just have nothing in our fridge": The invisible burden and dire consequences of food insecurity for people with cystic fibrosis in the United States.Pediatric pulmonology · 2024Article
- Potential, Pitfalls, and Future Directions for Remote Monitoring of Chronic Respiratory Diseases: Multicenter Mixed Methods Study in Routine Cystic Fibrosis Care.Journal of medical Internet research · 2024Observational
- Transforming the nutrition care model for infants with cystic fibrosis: A qualitative study of clinicians' perspectives.Pediatric pulmonology · 2023Article
- Screening for Cystic Fibrosis Related Complications in the Context of a Pandemic and Altered Models of Care.Health services insights · 2023Article
- Telemedicine in healthcare access during the covid-19 pandemic: a scoping review.Revista de saude publica · 2023Article
- Perceptions of caregivers and adolescents/young adults with cystic fibrosis regarding health care transition readiness during the COVID-19 pandemic: A qualitative study.Health care transitions · 2023Article
- Accessing hearing-health services for deaf and hard-of-hearing children during the COVID-19 pandemic: Parent and child perspectives.The Australian journal of social issues · 2022Article
- The Changing Landscape of Nutrition in Cystic Fibrosis: The Emergence of Overweight and Obesity.Nutrients · 2022Review
- 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
- 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
- Design and methods for understanding the state of cystic fibrosis care amid the COVID-19 pandemic.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2021Article
- The life rafts sailed; Now let's take stock and set the course ahead (Commentary).Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2021Article
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Authors and funding
8 authors at 4 institutions in 1 country.
Funding
Abstract
backgroundDuring the COVID-19 pandemic, CF centers shifted to a telehealth delivery model. Our study aimed to determine how people with CF (PwCF) and their families experienced telehealth and assessed its quality and acceptability for future CF care.
methodsThe CF Patient and Family State of Care Survey (PFSoC) was fielded from August 31-October 30, 2020. The PFSoC explored themes of overall telehealth quality, ease of use, desirability, and preference for a future mix of in-person and telehealth care. Demographic covariates considered included: gender, age, CFTR modulator status, and region of residence.
results424 PwCF and parents of PwCF responded (47% parents). Most (81%) reported a telehealth visit which included a MD/APP and nurse team members. 91% found telehealth easy to use, and 66% reported similar/higher quality than in-person care. One-third (34%) reported the highest desire for future telehealth care, with 45% (n =212) desiring 50% or more of visits conducted via telehealth. Adults were more likely than parents to report highest desire for future telehealth (64% vs. 36%). Respondents who perceived telehealth as similar/higher quality were more likely to desire future telehealth compared to those who perceived telehealth as lower quality (96% vs. 50%). Mixed methods analysis revealed themes affecting perceptions of telehealth.
conclusionsPwCF desire for future telehealth was influenced by perception of quality and age. Several themes emerged that need to be explored as telehealth is adapted into the CF chronic care model, especially when thinking about integration into pediatric care.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.