Dana Albon, Thida Ong, Bethany Horton, David Brighton, Shiyi Shen, Rhonda List, Nicholas Antos, Fadi Asfour, Ella Balasa, Danielle Beachler, Cori Daines, Deborah Froh, Catherine Kier, Samya Nasr, Meghana Sathe, Gregory Sawicki, Michael Schechter, George Solomon, Michael Powers
{"title":"COVID-19大流行期间囊性纤维化学习网络远程医疗创新实验室：对获得护理、结果和新的CF护理模式的影响。","authors":"Dana Albon, Thida Ong, Bethany Horton, David Brighton, Shiyi Shen, Rhonda List, Nicholas Antos, Fadi Asfour, Ella Balasa, Danielle Beachler, Cori Daines, Deborah Froh, Catherine Kier, Samya Nasr, Meghana Sathe, Gregory Sawicki, Michael Schechter, George Solomon, Michael Powers","doi":"10.1002/ppul.71102","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Cystic fibrosis (CF) is a chronic genetic disorder requiring regimented visits for maintenance of care. The COVID-19 pandemic accelerated the accessibility of telehealth (TH) and forced a trial of incorporating remote care into routine CF care. The CF Learning Network (CFLN) organized for data sharing into a telehealth innovation lab (TH-iLab) to improve access to the interdisciplinary care team and co-produced shared agenda-setting.</p><p><strong>Methods: </strong>All persons with CF (PwCF) with a CF diagnosis in the CF Foundation Registry (CFFPR) from 1/2020-12/2021 were included and categorized into CFLN TH-iLab, CFLN TH-iLab non-participants, and non-CFLN programs.</p><p><strong>Hypothesis: </strong>standardized TH implementation in the CFLN TH-iLab is associated with increased access to the CF care model and results in similar lung function and nutrition health outcomes.</p><p><strong>Results: </strong>In 2020 and 2021, the average number of TH visits per person per year and the percentage of PwCF with one or more TH visits per year were higher in the CFLN TH-iLab than in the other groups. Lung function was highest in PwCF, followed by a program that was part of the CFLN TH-iLab in 2020 and 2021. Anthropometric measurements, spirometry, and attainment of microbiology cultures were similar among all three groups. Access to interdisciplinary care was highest in the CFLN non-TH-iLab group.</p><p><strong>Conclusion: </strong>Integrating TH into CF care in the CFLN TH-iLab provided access to care during the COVID-19 pandemic without compromising clinical outcomes. Further research on optimizing the telehealth experience for PwCF can help better understand TH's long-term impact on CF care.</p>","PeriodicalId":19932,"journal":{"name":"Pediatric Pulmonology","volume":"60 5","pages":"e71102"},"PeriodicalIF":2.7000,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12052861/pdf/","citationCount":"0","resultStr":"{\"title\":\"Cystic Fibrosis Learning Network Telehealth Innovation Lab During the COVID-19 Pandemic: Impact on Access to Care, Outcomes, and a New CF Care Model.\",\"authors\":\"Dana Albon, Thida Ong, Bethany Horton, David Brighton, Shiyi Shen, Rhonda List, Nicholas Antos, Fadi Asfour, Ella Balasa, Danielle Beachler, Cori Daines, Deborah Froh, Catherine Kier, Samya Nasr, Meghana Sathe, Gregory Sawicki, Michael Schechter, George Solomon, Michael Powers\",\"doi\":\"10.1002/ppul.71102\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>Cystic fibrosis (CF) is a chronic genetic disorder requiring regimented visits for maintenance of care. The COVID-19 pandemic accelerated the accessibility of telehealth (TH) and forced a trial of incorporating remote care into routine CF care. The CF Learning Network (CFLN) organized for data sharing into a telehealth innovation lab (TH-iLab) to improve access to the interdisciplinary care team and co-produced shared agenda-setting.</p><p><strong>Methods: </strong>All persons with CF (PwCF) with a CF diagnosis in the CF Foundation Registry (CFFPR) from 1/2020-12/2021 were included and categorized into CFLN TH-iLab, CFLN TH-iLab non-participants, and non-CFLN programs.</p><p><strong>Hypothesis: </strong>standardized TH implementation in the CFLN TH-iLab is associated with increased access to the CF care model and results in similar lung function and nutrition health outcomes.</p><p><strong>Results: </strong>In 2020 and 2021, the average number of TH visits per person per year and the percentage of PwCF with one or more TH visits per year were higher in the CFLN TH-iLab than in the other groups. Lung function was highest in PwCF, followed by a program that was part of the CFLN TH-iLab in 2020 and 2021. Anthropometric measurements, spirometry, and attainment of microbiology cultures were similar among all three groups. Access to interdisciplinary care was highest in the CFLN non-TH-iLab group.</p><p><strong>Conclusion: </strong>Integrating TH into CF care in the CFLN TH-iLab provided access to care during the COVID-19 pandemic without compromising clinical outcomes. Further research on optimizing the telehealth experience for PwCF can help better understand TH's long-term impact on CF care.</p>\",\"PeriodicalId\":19932,\"journal\":{\"name\":\"Pediatric Pulmonology\",\"volume\":\"60 5\",\"pages\":\"e71102\"},\"PeriodicalIF\":2.7000,\"publicationDate\":\"2025-05-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12052861/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Pediatric Pulmonology\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1002/ppul.71102\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"PEDIATRICS\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Pediatric Pulmonology","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1002/ppul.71102","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"PEDIATRICS","Score":null,"Total":0}
Cystic Fibrosis Learning Network Telehealth Innovation Lab During the COVID-19 Pandemic: Impact on Access to Care, Outcomes, and a New CF Care Model.
Background: Cystic fibrosis (CF) is a chronic genetic disorder requiring regimented visits for maintenance of care. The COVID-19 pandemic accelerated the accessibility of telehealth (TH) and forced a trial of incorporating remote care into routine CF care. The CF Learning Network (CFLN) organized for data sharing into a telehealth innovation lab (TH-iLab) to improve access to the interdisciplinary care team and co-produced shared agenda-setting.
Methods: All persons with CF (PwCF) with a CF diagnosis in the CF Foundation Registry (CFFPR) from 1/2020-12/2021 were included and categorized into CFLN TH-iLab, CFLN TH-iLab non-participants, and non-CFLN programs.
Hypothesis: standardized TH implementation in the CFLN TH-iLab is associated with increased access to the CF care model and results in similar lung function and nutrition health outcomes.
Results: In 2020 and 2021, the average number of TH visits per person per year and the percentage of PwCF with one or more TH visits per year were higher in the CFLN TH-iLab than in the other groups. Lung function was highest in PwCF, followed by a program that was part of the CFLN TH-iLab in 2020 and 2021. Anthropometric measurements, spirometry, and attainment of microbiology cultures were similar among all three groups. Access to interdisciplinary care was highest in the CFLN non-TH-iLab group.
Conclusion: Integrating TH into CF care in the CFLN TH-iLab provided access to care during the COVID-19 pandemic without compromising clinical outcomes. Further research on optimizing the telehealth experience for PwCF can help better understand TH's long-term impact on CF care.
期刊介绍：
Pediatric Pulmonology (PPUL) is the foremost global journal studying the respiratory system in disease and in health as it develops from intrauterine life though adolescence to adulthood. Combining explicit and informative analysis of clinical as well as basic scientific research, PPUL provides a look at the many facets of respiratory system disorders in infants and children, ranging from pathological anatomy, developmental issues, and pathophysiology to infectious disease, asthma, cystic fibrosis, and airborne toxins. Focused attention is given to the reporting of diagnostic and therapeutic methods for neonates, preschool children, and adolescents, the enduring effects of childhood respiratory diseases, and newly described infectious diseases.
PPUL concentrates on subject matters of crucial interest to specialists preparing for the Pediatric Subspecialty Examinations in the United States and other countries. With its attentive coverage and extensive clinical data, this journal is a principle source for pediatricians in practice and in training and a must have for all pediatric pulmonologists.
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