囊性纤维化患者体力活动的远程监测:来自一个囊性纤维化中心的经验

TELEMONITORIZATION OF PHYSICAL ACTIVITY IN CYSTIC FIBROSIS: EXPERIENCE FROM A CYSTIC FIBROSIS CENTER

International Journal of Rehabilitation Research · 2026
被引 0 · 同刊同年前 2%
ABS 3

中文导读

研究评估了通过智能手机应用远程监测囊性纤维化患者体力活动的可行性,发现多数患者活动量不足,但远程监测是可行的工具。

Abstract

Introduction: Physical activity and exercise play an important role in cystic fibrosis (CF). However, adherence and monitoring can be challenging. This study aims to evaluate the feasibility of physical activity telemonitorization in patients with CF. Materials and Methods: We collected data from adult patients with CF followed at a Portuguese CF center, including FEV1, use of CFTR modulator therapy, and use of airway secretion devices. Physical activity was monitored remotely by daily step count, using smartphone applications connected to a digital health platform, during the first two weeks of monitorization. Physical exercise was self-reported by patients. Symptoms and vital signs were also recorded. Quality of life was assessed using validated questionnaires, including CF questionnaire revised (CFQ-R), London Chest Activity of Daily Living Scale (LCADLS), Pulmonary Rehabilitation Adapted Index of Self-Efficacy (PRAISE) and Hospital anxiety and depression scale (HADS). Results: Fifteen patients were monitored through the platform, with a median age of 27 ± 6 years old. All patients were receiving therapy with elexacaftor/tezacaftor/ivacaftor (Kaftrio®). Eight patients had FEV1 values below the normal predicted range. Three patients used oscillatory positive expiratory pressure (OPEP) devices, and one patient used a mechanical insufflation-exsufflation device. Five patients recorded a median of fewer than 5000 daily steps on the first week, increasing to eight patients during the second week. The median LCADLS was 16, the median PRAISE was 53, and the median HADS was 15. Conclusions: Tele-monitorization appears to be a viable tool to monitor physical activity. However, this study has several limitations as some patients did not fully adhere to the platform. Although most patients perceived their health status as good, physical activity remains limited for some, most exhibiting a low active or a sedentary lifestyle. Importantly, the future goal of this group is to have individualized physical activity and exercise prescriptions based on telemonitorization and telecoaching. Anexos 2273_0.png

囊性纤维化远程医疗体力活动肺康复生活质量