RESUMO
Background: Cystic fibrosis (CF) is a progressive, genetic, multisystem disease. Exacerbations lead to long hospital stays and significant morbidity and mortality. At the crux of pulmonary exacerbation prevention is serial monitoring of pulmonary function tests and frequent outpatient follow-up. Patients at the Helen Devos Children's Hospital CF clinic receive quarterly multidisciplinary care from a CF clinic, but this schedule was complicated by the COVID-19 pandemic because of concern of infection precipitating a pulmonary exacerbation. In lieu of in-person visits, telemedicinewas used to continue necessary monitoring. The purpose of this study was to assess the accessibility, efficacy, and comfort of telemedicine visits at the CF clinic from the patient and provider perspective. Method(s): CF clinic parents and providers completed an anonymous survey by mail or email over a 6-month period. Patient surveys used a 5-point Likert scale to assess responses in four categories-accessibility, functionality, safety, and overall satisfaction-and an open-ended question on patient opinions of their telemedicine experience. Descriptive statistics and comparative means were used to interpret the data. Result(s): Average patient agewas 9.7, average years since diagnosis was 9.5, 53% of patients were male, and average one-way distance traveled to the clinic was 70 minutes (range 15-240). Patients reported that they had few difficulties accessing in-person visits at the clinic. They also reported the telemedicine experience to be functional and easy to navigate. In terms of safety (perceived assessment of respiratory status, overall health, and patients concerns), patients reported feeling neutral to moderate. Patients reported being very comfortable with virtual visits and moderately likely to schedule telemedicine visits at the CF clinic in the future. There was no correlation between travel distance to the clinic and likeliness of scheduling virtual visits in the future, although older patients were more likely to schedule virtual visits in the future. A few factors could be in play here;patients reported in-person visits to be very accessible, reporting that they rarely missed scheduled visits. Some patients reported internet connection problems, which may be more prevalent in rural areas farther from the clinic. At the time of this survey, patients did not have in-home spirometry. Provider responses were overwhelmingly positive, with high opinions of effectiveness, safety, and overall satisfaction. Providers also reported a subjective decrease in no-show rates for virtual visits. Conclusion(s): Virtual visits were found to be functional and have no perceived negative effects on safety. Patients reported high levels of comfort with virtual visits, although they were only moderately likely to schedule virtual visits in the future. This data, in conjunction with the open-ended responses, can be used to improve the CF telemedicine experience;patients are currently offered virtual visits every 6 months.Copyright © 2022, European Cystic Fibrosis Society. All rights reserved