Patient and family perceptions of telehealth as part of the cystic fibrosis care model during COVID-19

•This survey-based study assessed patient and family experience of telehealth care during the COVID-19 pandemic.•Telehealth Care was viewed as feasible, convenient, and satisfactory in the care delivery model for a large proportion of patients and patient families.•Barriers to ongoing utilization included lack of in-person assessments technological limitations were not viewed as a barrier by respondents.•This study demonstrates patient interest in potential long-term utilization of telehealth in the CF chronic disease care model. Cystic Fibrosis (CF) is a chronic multi-system disease best cared for at Care centers with routine monitoring by interdisciplinary teams. Previously, remote home monitoring technology has been explored to augment in-person care. During the COVID-19 pandemic, traditional in-person care was limited and CF centers rapidly adapted to a telehealth delivery model. The purpose of this study was to understand how people with CF (PwCF) and families of PwCF experienced the shift to telehealthcare delivery. This was a cross-sectional survey-based study conducted in 11 CF Centers. Two surveys were designed (one for adult PwCF and one for parents/guardians of PwCF) by participating CF center members with patient and family partner input. Surveys were disseminated electronically via email/text to all patients who completed a telehealth visit, and data were collected on secure Google Forms. Respondents rated their telehealth experiences as positive. Most were highly satisfied with their telehealth visit (77% adult, 72% pediatric) and found the visits to be highly convenient (85% for all surveyed). A majority of patients reported they had adequate time during the visit and had all questions and concerns addressed. Importantly, we also identified concerns regarding lack of in-person assessments including pulmonary function testing (PFT) and throat/sputum culture. Telehealth was a feasible and well-accepted mechanism for delivering care in a chronic CF care model during the COVID-19 pandemic and may be useful in the post-pandemic era. Further work is needed to understand the impact of telehealth on patient outcomes, healthcare utilization and associated cost.