Remote monitoring in telehealth care delivery across the U.S. cystic fibrosis care network

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.

Telehealth and CFTR modulators: Accelerating innovative models of cystic fibrosis care

“…Since the onset of the pandemic PwCF/families have played a more active role in taking measurements at home (e.g. height, weight, blood glucose, homespirometry) and coordinating collection of blood and respiratory samples, collected at home (and mailed to the care center for anal-ysis) or collected and analyzed at other locations (with the results sent to the care center) [24] . The COVID-19 pandemic has empowered more patients to take a larger stake in tracking their health care metrics.…”

Real‐world feasibility of short‐term, unsupervised home spirometry in CF

“…During the COVID‐19 pandemic, there was a rapid shift to telehealth services to maintain access to ambulatory care 2 . PwCF were eager for solutions to the limited in‐person assessments 3 and there was widespread adoption of home spirometry in the CF population in the United States 4 and globally 5 . Prior validation studies of various devices demonstrated concordance to in‐clinic measures in a supervised setting, 6,7 with conflicting findings of accuracy in an unsupervised setting 8–10 .…”

A year in review: Real world evidence, functional monitoring and emerging therapeutics in 2021

“…In general, this has been reasonably successfully implemented and accepted by PwCF and care providers, particularly adults [8] , [9] , [10] , [11] , [12] . Health care providers and PwCF have adapted to home spirometry, remote microbiological sample collection, blood monitoring and video consultants well [ 7 , 10 , 13 ]. Advantages include less risk of cross infection and convenience for PwCF who are clinically well [ 10 , 14 , 15 ].…”

“…Disparities in high speed internet access and technology may create a ‘digital divide' [ 9 , 12 , 17 ]. Whilst the surge in telehealth has subsided and confidence in returning to face to face visits has grown, in person consultations will probably not return to pre pandemic levels [ 6 , [10] , [11] , [12] , [13] , [14] ]. Health care delivery has evolved and there is much work to do with evaluation and implementation of new hybrid models that address the individual needs of PwCF.…”