Thida Ong1, Aricca D Van Citters2, Christopher Dowd3, Jason Fullmer4, Rhonda List5, Shine-Ann Pai6, Clement L Ren7, Peter Scalia2, George M Solomon8, Gregory S Sawicki9. 1. Division of Pulmonary and Sleep Medicine, Seattle Children's Hospital, Seattle, WA, United States. Electronic address: thida.ong@seattlechildrens.org. 2. The Dartmouth Institute for Health Policy & Clinical Practice, Geisel School of Medicine at Dartmouth, Lebanon, NH, United States. 3. Cystic Fibrosis Foundation, Bethesda, MD, United States. 4. DCMG Pediatric Pulmonology & Sleep Medicine, Dell Children's Medical Group, Austin, TX, United States. 5. Division of Pulmonary and Critical Care, University of Virginia, Charlottesville, VA, United States. 6. Marnie Paul Specialty Care Center, Dell Children's Medical Center of Central Texas, Austin, TX, United States. 7. Division of Pulmonary and Sleep Medicine, Children's Hospital of Philadelphia, Philadelphia, PA, United States; Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, United States. 8. University of Alabama at Birmingham, Birmingham, AL, United States. 9. Division of Pulmonary Medicine, Boston Children's Hospital, Boston, MA, United States.
Abstract
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.
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.
Authors: Christopher Dowd; Aricca D Van Citters; Olivia Dieni; Anne Willis; Leslie Powell; Kathryn A Sabadosa Journal: J Cyst Fibros Date: 2021-12 Impact factor: 5.482