个性化远程与门诊运动训练对血友病患者下肢运动功能及生活质量的影响:单中心随机对照研究
Effects of Remote Versus Outpatient Exercise Training on Lower Extremity Motor Function and Quality of Life in People with Hemophilia: Randomized Controlled Trial
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摘要: 目的 比较个性化远程运动训练与门诊运动训练对改善血友病患者(people with hemophilia,PWH)下肢关节运动功能和生活质量的疗效差异。方法 选取2025年8-11月在北京协和医院康复医学科接受康复治疗的PWH为研究对象,将其随机分为远程运动训练组与门诊运动训练组。两组患者均接受每周3次、连续8周的规律康复训练:远程运动训练组在手机应用程序APP督导下进行居家运动训练,门诊运动训练组在门诊康复治疗师指导下进行康复训练。治疗前后分别采用血友病关节健康评分2. 1(Hemophilia Joint Health Score 2. 1,HJHS2. 1)、关节活动度(range of motion,ROM)、欧洲五维健康量表(European Quality of Life Five-Dimension Scale,EQ-5D)、焦虑量表(Generalized AnxietyDisorder-7,GAD-7)及抑郁量表(Patient Health Questionnaire-9,PHQ-9)对患者进行评估。结果 共入选符合标准的PWH 17例,其中远程运动训练组8例,门诊运动训练组9例。训练前后比较,远程运动训练组的HJHS总分改善幅度为18. 36%,门诊运动训练组改善幅度为21. 00%。在受累最严重的关节活动度方面,组内比较结果显示,门诊运动训练组膝关节活动度改善具有统计学意义,伸膝角度与屈膝角度均较训练前显著增加。在踝关节活动度方面,两组在背屈与跖屈角度的训练前后差异均无统计学意义。在生活质量方面,门诊运动训练组干预8周后,其EQ-5D-VAS评分较基线显著提升;远程运动训练组的EQ-5D-5L与VAS评分均显著改善。两组GAD-7与PHQ-9评分的组间比较及组内比较均无统计学显著性。结论 远程运动训练与门诊运动训练均可显著改善PWH的关节健康状况和生活质量。远程运动训练作为一种可及性高、灵活的康复模式,可作为PWH关节健康管理的有效替代方案。Abstract: Objective To compare the efficacy of personalized remote exercise training versus outpatient exercise training in improving joint health, motor function, and quality of life in people with hemophilia (PWH). Methods PWH patients who received rehabilitation treatment in the Department of Rehabilitation Medicine at Peking Union Medical College Hospital from August to November 2025 were selected as the study subjects and randomly divided into a remote exercise training group and an outpatient exercise training group. Both groups re- ceived rehabilitation training three times per week for eight consecutive weeks. The remote training group per- formed home-based exercises guided by a mobile application, while the outpatient group received therapist-su- pervised training in the clinic. Assessments before and after the intervention included the Hemophilia Joint Health Score version 2. 1 (HJHS 2. 1), joint Range of Motion (ROM), the European Quality of Life Five-Di- mension Scale (EQ- 5D), the Generalized Anxiety Disorder- 7 (GAD- 7), and the Patient Health Questionnaire-9 (PHQ-9) for anxiety and depression symptoms. Results A total of 17 eligible PWH were en- rolled, comprising 8 in the remote training group and 9 in the outpatient training group. Following the interven- tion, the HJHS total score improved by 18. 36%in the remote group and by 21. 00%in the outpatient group. For the most affected joint's ROM, within-group analysis showed that the outpatient group achieved statistically sig- nificant improvement in knee joint extension and flexion angles. However, no significant changes were observed in ankle dorsiflexion or plantarflexion angles in either group. In terms of quality of life, the outpatient training group showed a significant improvement in EQ- 5D-VAS scores after the 8-week intervention compared with baseline; meanwhile, the remote training group demonstrated significant improvements in both EQ- 5D- 5L and VAS scores. No statistically significant within-group or between-group differences were found for GAD- 7 and PHQ-9 scores. Conclusions Both personalized remote exercise training and outpatient exercise training signif-icantly improve joint health and quality of life in PWH. Remote exercise training, characterized by high accessi- bility and flexibility, can serve as an effective alternative for joint health management in this population.
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