Telehealth by Home Monitoring and Video Consultation for Children With Cystic Fibrosis: Qualitative and Quantitative Study

Background: Clinical outcomes for patients with cystic fibrosis have improved over the last decades, with a focus on enhancing the quality of life for children and their families. These improvements are expected to reduce the need for in-hospital visits, allowing for alternative care provisions that further enhance their quality of life. Telehealth can decrease the number of in-hospital visits and disruptions to everyday life. Objective: This study aims to assess the feasibility of home monitoring with subsequent video consultations and to explore the experiences of families and health care professionals. Methods: We recruited 12 children with cystic fibrosis (>6 y) and their parents from the Cystic Fibrosis-Center Copenhagen. The 5-month intervention consisted of alternately standard care visits and telehealth care visits. Telehealth care visits consisted of home monitoring, with automatically transmitted data to the hospital-based electronic health record. Home monitoring included spirometry, weight, and oxygen saturation, conducted with parental support, along with a video consultation. To monitor lung infections during telehealth care visits, all participants were encouraged to send in a sputum sample beforehand. Families completed preintervention and postintervention questionnaires about time spent, sense of security, and usability of home monitoring devices. We also collected data on families' and health care professionals' experiences with telehealth care visits through semistructured interviews after the intervention. Results: All 12 (100%) approached children and their parents accepted to participate. Standard care visits caused full-day absences for 8 (73%) children and 10 (91%) parents, compared to only 1 (8%) child and their parents during telehealth visits. More than 70% of children and their parents rated the oxygen saturation device (n=9, 75%) and weighing scale (n=11, 92%) as "very easy" to use after the intervention. However, 50% (n=6) found the home spirometry device "difficult" or "acceptable" to use, possibly due to device errors. We identified 4 main themes in the interviews: benefits of telehealth, disadvantages of telehealth, prerequisites for telehealth to be successful, and next steps toward telehealth. Conclusions: Home monitoring with automatically transmitted data to the hospital-based electronic health record and video consultations was feasible despite identified concerns regarding technical issues with home spirometry devices.