Telehealth by Home Monitoring and Video Consultation for Children with Cystic Fibrosis – A Pilot Study (Preprint)

UNSTRUCTURED Background Clinical outcomes for patients with cystic fibrosis (CF) have improved over the last decades with focus on enhancing the quality of life for children and their families. These improvements are expected to lower the risk associated with fewer 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 disruption of everyday life. This pilot study examined the feasibility and explored the families’ and the healthcare professionals’ (HCPs) experiences in conducting home monitoring and subsequent video consultations. Methods We included 12 children with CF (>6 years) and their parents from CF-center Copenhagen. The five-month intervention consisted of alternately standard care visits (SCV) and telehealth care visits (TCV). TCV consisted of home monitoring with automatically transmitted data to the hospital-based electronic health record. Home monitoring involved spirometry, weight, and oxygen saturation conducted by the children supported by their parents, and a video consultation. To monitor lung infections during TCVs, all participants were encouraged to send in a sputum sample before having a TCV. Families completed pre- and post-intervention questionnaires about time spent, sense of security and usability of devices. We also collected information about families’ and HCPs experiences with TCV by semi-structured interviews after the intervention. Results All approached children and their parents accepted to participate. Children and their parents attended school and work more during the intervention and rated most devices easy to use. Though, more than 50% found the home spirometry device “difficult” or “acceptable” to use, possibly due to device errors. We identified four main themes in the interviews: Benefits of telehealth, Disadvantages of telehealth, Prerequisites for success, and Next steps towards telehealth. Conclusion Home monitoring with automatically transmitted data to the hospital-based electronic health record and video consultations were feasible despite identified concerns regarding technical issues on home spirometry devices and missing sputum samples.