Giunti Guido, Yrttiaho Tiia, Guardado-Medina Sharon, Sachinopoulou Anna, Mylonopoulou Vasiliki, Fält Jani, Paloniemi Benjamin, Ryytty Mervi, Krüger Johanna, Isomursu Minna
Faculty of Medicine, University of Oulu, Oulu, Finland; School of Medicine, Trinity College Dublin, Dublin, Ireland; FutureNeuro Research Ireland Centre, Academic Unit of Neurology, School of Medicine, Trinity College Dublin, Ireland.
Faculty of Medicine, University of Oulu, Oulu, Finland.
Mult Scler Relat Disord. 2025 May;97:106379. doi: 10.1016/j.msard.2025.106379. Epub 2025 Mar 8.
Fatigue is the most debilitating and prevalent symptom of multiple sclerosis (MS), affecting up to 80 % of patients and significantly impairing quality of life (QoL). Managing MS fatigue is challenging due to its multifactorial nature, encompassing physical, cognitive, and psychosocial components. Mobile health (mHealth) tools offer promising approaches for self-management, but most lack personalization and rigorous validation. More Stamina, a gamified mHealth application, was developed to support MS patients by tracking energy expenditure and facilitating fatigue management.
A 60-day mixed-methods pilot study was conducted with 20 participants recruited from Oulu University Hospital, Finland. Participants, meeting predefined criteria for MS diagnosis and digital health literacy, tracked daily activities using More Stamina. Standardized instruments assessed fatigue: Fatigue Severity Scale (FSS), QoL (15D), System Usability Scale (SUS), and eHealth literacy (eHEALS). App engagement patterns were analyzed using log data, while think-aloud protocols and semi-structured interviews captured qualitative insights into user experience.
Participants were segmented into power, regular, and light users based on level of engagement. Power users reported higher fatigue severity (mean FSS = 6.31) but better QoL (mean inverted HRQoL = 0.58) compared to light users. More Stamina usability scores improved over time (SUS mean: Day 1 = 27.75; Day 60 = 35.88), reflecting growing fluency of use. Activity tracking included physical, cognitive, and social tasks, revealing subjective differences in perceived energy costs. Participants highlighted the app's role in increasing self-awareness of fatigue and facilitating communication with family and healthcare providers. Emerging uses included journaling and tracking fatigue patterns for medical consultations. Challenges included technical issues and the cognitive burden of repetitive data entry.
More Stamina is a feasible and acceptable gamified mHealth app for MS fatigue management. It seems to improve self-awareness and supports proactive energy planning, particularly for users with severe fatigue. Despite initial technical challenges, the app shows potential for integration into broader MS management strategies. Larger, long-term studies are needed to evaluate clinical efficacy and optimize design for sustained engagement.
疲劳是多发性硬化症（MS）最使人衰弱且最常见的症状，影响多达80%的患者，并严重损害生活质量（QoL）。由于MS疲劳具有多因素性质，包括身体、认知和心理社会成分，因此对其进行管理具有挑战性。移动健康（mHealth）工具为自我管理提供了有前景的方法，但大多数缺乏个性化和严格验证。“更多耐力”（More Stamina）是一款游戏化的mHealth应用程序，旨在通过跟踪能量消耗和促进疲劳管理来支持MS患者。
在芬兰奥卢大学医院招募了20名参与者，进行了一项为期60天的混合方法试点研究。符合MS诊断和数字健康素养预定义标准的参与者使用“更多耐力”跟踪日常活动。使用标准化工具评估疲劳：疲劳严重程度量表（FSS）、生活质量（15D）、系统可用性量表（SUS）和电子健康素养（eHEALS）。使用日志数据分析应用程序的参与模式，同时通过出声思维协议和半结构化访谈获取对用户体验的定性见解。
根据参与程度将参与者分为重度、中度和轻度用户。与轻度用户相比，重度用户报告的疲劳严重程度更高（平均FSS = 6.31），但生活质量更好（平均反向健康相关生活质量 = 0.58）。“更多耐力”的可用性得分随时间提高（SUS平均值：第1天 = 27.75；第60天 = 35.88），反映出使用的流畅性不断提高。活动跟踪包括身体、认知和社交任务，揭示了感知能量成本的主观差异。参与者强调了该应用程序在提高疲劳自我意识以及促进与家人和医疗保健提供者沟通方面的作用。新出现的用途包括写日记和跟踪疲劳模式以供医疗咨询。挑战包括技术问题和重复数据输入的认知负担。
“更多耐力”是一款用于MS疲劳管理的可行且可接受的游戏化mHealth应用程序。它似乎能提高自我意识并支持积极的能量规划，特别是对于严重疲劳的用户。尽管存在最初的技术挑战，但该应用程序显示出融入更广泛的MS管理策略的潜力。需要进行更大规模的长期研究来评估临床疗效并优化设计以实现持续参与。
