Methods for monitoring pulmonary health in cystic fibrosis patients in a remote first care environment-a survey

Background: Recent social distancing practices due to the COVID-19 pandemic have caused the cystic fibrosis (CF) community to transition to remote routine care As a result, several important measures of pulmonary health, including FEV1, are not currently possible to collect through traditional in-clinic methods, requiring the substitution of new remote methods for pulmonary health monitoring Thus, we conducted a survey to develop an updated understanding of how people living with CF and their care teams can effectively monitor and communicate changes to pulmonary health in a remote setting, while maintaining high levels of care Methods: We created a 27-question survey, administered through TypeForm, and sent to a cohort of existing Folia Health users in the CF community in early May 2020 The survey featured nominal and ordinal questions focused on how people living with CF or their caregivers were tracking pulmonary symptoms during the coronavirus pandemic, their access to home spirometry devices, their preferences for future pulmonary health monitoring, and their preferences for communicating symptom changes and spirometry results to their care teams We then performed descriptive analysis, with age, and spirometry access stratifications Results: We received 43 responses and found a majority of participants (67%) felt comfortable tracking pulmonary symptoms at home and 77% of people already had a plan for remote monitoring in place However, most (84%) were still interested in adding new symptoms, FEV1 devices and/or additional clinic communication methods as remote routine care becomes standard For those interested in additions to their home-based tracking, communication methods received the most responses for ways to improve (88%), such as patients and caregivers wanting their care teams to receive automatic notifications regarding changes to symptoms or at-home spirometry results About 1/4 of respondents owned a home spirometry device, and currently use this as a primary monitoring method Most (81%) respondents without home spirometry devices would be interested in adding one, and 96% of them would be interested in using it on a weekly or monthly basis There was significant variation in expected cadence of use among respondents, ranging from more than once per week to less than once per month Nearly half (46%) of respondents were interested in adding guided pulmonary symptom tracking to their current monitoring routine Conclusions: Respondents would prefer more ways to communicate changes in pulmonary health to care teams outside of quarterly remote visits, especially in an automated, asynchronous manner They are interested in additional guidance for pulmonary symptom tracking, and we believe additional guidance on the best cadence for home spirometry would also be useful, given the variation in expected use among respondents We recommend people with CF and caregivers have a conversation with their care teams on the best methods for ensuring clear communication of changes in health, including important symptom tracking and the use of home spirometry where applicable We also recommend that clinicians consider methods for receiving asynchronous information from patients and caregivers on changes reported via digital home-tracking