Albon Dana, Ong Thida, Horton Bethany, Brighton David, Shen Shiyi, List Rhonda, Antos Nicholas, Asfour Fadi, Balasa Ella, Beachler Danielle, Daines Cori, Froh Deborah, Kier Catherine, Nasr Samya, Sathe Meghana, Sawicki Gregory, Schechter Michael, Solomon George, Powers Michael
Department of Internal Medicine, Division of Pulmonary and Critical Care, University of Virginia, Charlottesville, Virginia, USA.
Seattle Children's Hospital, Pulmonary and Sleep Medicine, University of Washington School of Medicine, Pediatrics, Seattle, Washington, USA.
Pediatr Pulmonol. 2025 May;60(5):e71102. doi: 10.1002/ppul.71102.
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.
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.
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.
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.
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.
囊性纤维化（CF）是一种慢性遗传疾病，需要定期就诊以维持治疗。2019年冠状病毒病（COVID-19）大流行加速了远程医疗（TH）的可及性，并促使人们尝试将远程护理纳入常规CF护理。CF学习网络（CFLN）组织将数据共享到远程医疗创新实验室（TH-iLab），以改善跨学科护理团队的可及性，并共同制定了共享议程。
纳入2020年1月至2021年12月在CF基金会注册中心（CFFPR）诊断为CF的所有CF患者（PwCF），并将其分为CFLN TH-iLab组、CFLN TH-iLab非参与者组和非CFLN项目组。
CFLN TH-iLab中标准化的TH实施与CF护理模式的可及性增加相关，并导致相似的肺功能和营养健康结果。
在2020年和2021年，CFLN TH-iLab组中每人每年的TH就诊平均次数以及每年有一次或多次TH就诊的PwCF百分比高于其他组。PwCF的肺功能最高，其次是2020年和2021年作为CFLN TH-iLab一部分的项目。三组之间的人体测量、肺活量测定和微生物培养结果相似。CFLN非TH-iLab组获得跨学科护理的机会最高。
在CFLN TH-iLab中将TH整合到CF护理中，在COVID-19大流行期间提供了护理可及性，而不影响临床结果。进一步研究优化PwCF的远程医疗体验有助于更好地了解TH对CF护理的长期影响。
