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J Cyst Fibros ; 20 Suppl 3: 57-63, 2021 12.
Article in English | MEDLINE | ID: covidwho-1587342


BACKGROUND: Cystic fibrosis (CF) programs and people with CF (PwCF) employed various monitoring methods for virtual care during the COVID-19 pandemic. This paper characterizes experiences with remote monitoring across the U.S. CF community. METHODS: The CF Foundation (CFF) sponsored distribution of home spirometers (April 2020 to May 2021), surveys to PwCF and CF programs (July to September 2020), and a second program survey (April to May 2021). We used mixed methods to explore access, use, and perspectives regarding the use of remote monitoring in future care. RESULTS: By October 2020, 13,345 spirometers had been distributed, and 19,271 spirometers by May 2021. Programs (n=286) estimated proportions of PwCF with home devices increased over seven months: spirometers (30% to 70%), scales (50% to 70%), oximeters (5% to 10%) with higher estimates in adult programs for spirometers and oximeters. PwCF (n=378) had access to scales (89%), followed by oximeters (48%) and spirometers (47%), often using scales and oximeters weekly, and spirometers monthly. Over both surveys, some programs had no method to collect respiratory specimens for cultures associated with telehealth visits (47%, n=132; 41%, n=118). Most programs (81%) had a process for phlebotomy associated with a telehealth visit, primarily through off-site labs. Both PwCF and programs felt future care should advance remote monitoring and recommended improvements for access, training, and data collection systems. CONCLUSIONS: PwCF and programs experienced unprecedented access to remote monitoring and raised its importance for future care. Improvements to current systems may leverage these shared experiences to augment future care models.

COVID-19 , Cystic Fibrosis , Equipment and Supplies/supply & distribution , Home Care Services , Monitoring, Physiologic/methods , Spirometry , Adult , COVID-19/epidemiology , COVID-19/prevention & control , Child , Cystic Fibrosis/diagnosis , Cystic Fibrosis/epidemiology , Cystic Fibrosis/therapy , Delivery of Health Care/organization & administration , Delivery of Health Care/trends , Health Services Accessibility/organization & administration , Health Services Accessibility/standards , Home Care Services/organization & administration , Home Care Services/standards , Humans , Models, Organizational , Needs Assessment , Oximetry/instrumentation , Oximetry/methods , Quality Improvement , SARS-CoV-2 , Spirometry/instrumentation , Spirometry/methods , Telemedicine/methods , Telemedicine/standards , United States/epidemiology
J Cyst Fibros ; 20 Suppl 3: 41-46, 2021 12.
Article in English | MEDLINE | ID: covidwho-1587338


BACKGROUND: During 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. METHODS: The 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. RESULTS: 424 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. CONCLUSIONS: PwCF 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.

COVID-19 , Communication Barriers , Consumer Behavior/statistics & numerical data , Cystic Fibrosis , Disease Transmission, Infectious/prevention & control , Telemedicine , Adult , COVID-19/epidemiology , COVID-19/prevention & control , Child , Cystic Fibrosis/epidemiology , Cystic Fibrosis/psychology , Cystic Fibrosis/therapy , Family Health , Health Services Accessibility/organization & administration , Health Services Accessibility/trends , Humans , Models, Organizational , Patient Participation/methods , Patient Participation/psychology , Pediatrics/methods , Pediatrics/trends , Quality Improvement , Quality of Health Care/trends , SARS-CoV-2 , Telemedicine/methods , Telemedicine/organization & administration , Telemedicine/standards , United States/epidemiology