Factors associated with receiving CF care and use of telehealth in 2020 among persons with Cystic Fibrosis in the United States.

BACKGROUND: The COVID-19 pandemic resulted in the use of telehealth to deliver the cystic fibrosis (CF) care model, which recommends routine follow-up for monitoring of nutritional status, bacterial culture surveillance, pulmonary function testing, and screening for CF-related complications such as diabetes or osteoporosis. METHODS: The objective of this study was to use Cystic Fibrosis Foundation Patient Registry (CFFPR) data to quantify the extent to which persons with CF received the recommended components of the care model in 2019 versus 2020. A risk factor analysis was implemented to identify patient characteristics associated with attaining the recommended CF care and use of any telehealth using multivariable logistic regression. RESULTS: A total of 28,132 CFFPR participants were included in the study. The proportion of individuals meeting the recommendations for CF care was lower in 2020 for every indicator, and lower in adults compared to children. In adults, demographic, socioeconomic and CF-related disease covariates were significantly associated with both achieving an aggregate level of care and use of telehealth. In the pediatric population, minority race/ethnicity and markers of lower socioeconomic status were associated with a lower odds of telehealth use. In all analyses, having received the recommended level of care in 2019 was associated with a higher odds of both reported telehealth use and achieving the recommended elements of the CF care model in 2020. CONCLUSION: Fewer participants met recommendations for care in 2020 despite widespread use of telehealth, and use of telehealth did not equate to adherence to all aspects of CF care.

Risk factors associated with meeting the standard of care and use of telehealth in 2020 among persons with cystic fibrosis in the United States

Background: The COVID-19 pandemic led to a dramatic decrease in clinic visits for essential health care needs for individuals with cystic fibrosis (CF), but the decline in in-person visits was accompanied by a rapid pivot by many CF care centers to provide telehealth services, similar to the U.S. health care system as a whole. In the absence of in-person visits, we hypothesized that individuals with CF who used telehealth services would be more likely to meet standard of care as defined by Cystic Fibrosis Foundation (CFF) guidelines than individuals who did not use or did not have access to telehealth. We also hypothesized that telehealth use or access would be lower in particular demographic groups based on disparities seen in non-CF telehealth studies. Method(s): We used 2019 and 2020 data from the U.S. CFF Patient Registry (CFFPR) to describe patterns of telehealth use and evaluate associations between patient-level characteristics and use of telehealth in 2020 to achieve standard of care. We quantified the extent to which persons with CF received the recommended components of the care model, comparing 2019 and 2020. A risk factor analysis was implemented to identify patient characteristics associated with attaining standard of care and use of any telehealth in 2020 using multivariable logistic regression. Result(s): A total of 28,132 CFFPR participants were included in the study. The proportion of individuals meeting the individual standards of CF care was lower in 2020 than 2019 for every indicator and lower in adults than in children. In 2020, telehealth use was high among CFFPR participants, with 71% of children and 73% of adults reporting one or more telehealth encounter. In adults, demographic, socioeconomic and CF-related disease covariateswere significantly associated with achieving the overall standard of care and use of telehealth. In the pediatric population, Black race, Hispanic ethnicity, and markers of lower socioeconomic status were associated with lower odds of telehealth use. In all analyses, having received the standard of care in 2019 was associated with higher odds of reported telehealth use (odds ratio (OR) 1.28, 95% CI, 1.16-1.41 in children) and achieving the recommended elements of the CF care model in 2020 (OR 2.36, 95% CI, 2.11-2.64 in children;OR 2.61, 95% CI, 2.19-3.12 in adults). Conclusion(s): Fewer individuals with CF met standards of care in the United States in 2020 than in 2019, probably because of pandemic-related effects, although use of telehealth services increased adherence to some standards of care, such as four or more encounters of any type, mental health screening, and annual ancillary consultations, but not four pulmonary function tests or bacterial cultures annually. The analysis suggests that there are disparities in access to telehealth services. Adults or children who were Black or Hispanic or whose self or parents had lower levels of education had lower odds of telehealth use. Overall, CF care centers in the United States have proven remarkably adept in pivoting care models during the pandemic, and some aspects of these models are important to be retained in a post-pandemic era.Copyright © 2022, European Cystic Fibrosis Society. All rights reserved

The characterisation of a patient cohort that had home spirometry devices and opted into sharing their data with the US Cystic Fibrosis Foundation

Objectives: To analyse characteristics of people with cystic fibrosis (PwCF) who were using home spirometry devices (HS) during 2020–2021 Methods: During the COVID-19 pandemic, the CF Foundation (CFF) partnered with a technology vendor, ZephyRx, to distribute MIR HS devices to eligible PwCF. During 04/2020–12/2021, 20,157 spirometers were shipped to PwCF. PwCF enrolled in the CFF patient Registry (CFFPR) provided an additional consent to have their HS values linked to their CFFPR data. An application programming interface (API) was built to allow transfers of HS data (FEV1, FVC, FEF25–75, sex, date of birth, height) from each device. Each record contained a CFFPR ID to enable its linkage to the CFFPR. This analysis uses CFFPR data to describe the HS cohort and the data obtained through API to characterise HS utilisation trends. Demographic and clinical characteristics between the HS cohort and the 2019–2020 CFFPR population ages 7 and older were also compared. Results: 272 (94.4%) CF programs participated in the HS program. Records of 1,537 patients, who had activated their device by January 10, 2021, or earlier were linked to CFFPR. The cohort was 69.8% adult, 89.5% Caucasian, 57.8% female, and had a mean age of 27.8, and mean FEV1 of 79.9% predicted. When compared to the CFFPR population, the HS cohort was older, contained more Caucasians and females, and had lower lung function. The median number of acceptable FEV1 measurements supplied per PwCF was 4 (IQR 2–8). 1065 (69%) PwCF in the HS cohort continued to use their device 6 months from activation. Conclusions: HS data has the potential to augment care and research databases like the CFFPR. Little is known about PwCF’s long-term usage of HS devices in a real-world setting. While the HS cohort is small and may be biased compared to the CFFPR population, we have established a reliable channel for collecting HS data and that PwCF’s usage patterns suggests that most are using the devices on a regular basis.