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.