Jongen Peter Joseph, Ter Veen Gezien, Lemmens Wim, Donders Rogier, van Noort Esther, Zeinstra Esther
Department of Community and Occupational Medicine, University Medical Centre Groningen, University of Groningen, Groningen, Netherlands.
MS4 Research Institute, Nijmegen, Netherlands.
J Med Internet Res. 2020 Mar 9;22(3):e14297. doi: 10.2196/14297.
Empowerment helps persons with a chronic disease to self-manage their condition and increase their autonomy and participation. MSmonitor (Curavista bv) is an interactive Web-based program for self-management and multidisciplinary care in multiple sclerosis (MS). It includes, among others, short questionnaires on fatigue (Modified Fatigue Impact Scale-5 [MFIS-5]) and health-related quality of life (HRQoL, Leeds Multiple Sclerosis Quality of Life [LMSQoL]); long questionnaires on disabilities, perception of disabilities (Multiple Sclerosis Impact Profile), and HRQoL (Multiple Sclerosis Quality of Life-54); a Medication and Adherence Inventory and an Activity Diary. The combination MFIS-5, LMSQoL, and Medication and Adherence Inventory constitutes the Quick Scan.
This study aimed to investigate the short-term effects of MSmonitor on empowerment in patients with MS.
We conducted a quasi-experimental study in a general hospital. Of the 180 patients with MS, 125 were eligible, 30 used MSmonitor, and 21 participated in the study (mean age 45.4 years, SD 10.2 years). A total of 24 eligible patients who did not use MSmonitor constituted the control group (mean age 49.3 years, SD 11.4 years). At baseline and at 4 months, we assessed self-efficacy (Multiple Sclerosis Self-Efficacy Scale [MSSES]), participation and autonomy (Impact on Participation and Autonomy [IPA] questionnaire), and self-management (Partners In Health [PIH] questionnaire). Differences between time points and groups were tested with paired t tests and χ² tests.
In the MSmonitor group, follow-up values remained unchanged for MSSES control (P=.19), MSSES function (P=.62), IPA limitations (P=.26), IPA problems (P=.40), PIH recognition and management of symptoms (P=.52), PIH adherence to treatment (P=.80), and PIH coping (P=.73), whereas the PIH knowledge score had improved (mean 27.8, SD 1.7 vs mean 28.7, SD 2.0; P=.02). The overall utilization rate of the program components was 83% and that of the Quick Scan was 95%. In the control group, all outcomes had remained unchanged.
The results suggest that for first-time users of the MSmonitor program and their health care providers, it may not be justified to expect a short-term improvement in empowerment in terms of self-efficacy, self-management, autonomy, or participation. Furthermore, a lack of effect on empowerment is not because of nonusage of the program components.
赋能有助于慢性病患者自我管理病情，增强自主性并提高参与度。MSmonitor（Curavista bv公司）是一款基于网络的交互式程序，用于多发性硬化症（MS）的自我管理和多学科护理。它包括，除其他外，关于疲劳的简短问卷（改良疲劳影响量表-5[MFIS-5]）和健康相关生活质量（HRQoL，利兹多发性硬化症生活质量[LMSQoL]）；关于残疾、残疾认知（多发性硬化症影响量表）和HRQoL（多发性硬化症生活质量-54）的长问卷；药物与依从性量表以及活动日记。MFIS-5、LMSQoL以及药物与依从性量表的组合构成快速筛查。
本研究旨在调查MSmonitor对MS患者赋能的短期影响。
我们在一家综合医院进行了一项准实验研究。180例MS患者中，125例符合条件，30例使用了MSmonitor，21例参与了研究（平均年龄45.4岁，标准差10.2岁）。共有24例未使用MSmonitor的符合条件患者构成对照组（平均年龄49.3岁，标准差11.4岁）。在基线和4个月时，我们评估了自我效能感（多发性硬化症自我效能量表[MSSES]）、参与度和自主性（对参与和自主性的影响[IPA]问卷）以及自我管理（健康伙伴[PIH]问卷）。时间点和组间差异采用配对t检验和χ²检验。
在MSmonitor组中，MSSES控制（P=0.19）、MSSES功能（P=0.62）、IPA限制（P=0.26）、IPA问题（P=0.40）、PIH症状识别与管理（P=0.52）、PIH治疗依从性（P=0.80）和PIH应对（P=0.73）的随访值保持不变，而PIH知识得分有所提高（平均27.8，标准差1.7对平均28.7，标准差2.0；P=0.02）。该程序组件的总体使用率为83%，快速筛查的使用率为95%。在对照组中，所有结果均保持不变。
结果表明，对于首次使用MSmonitor程序的患者及其医疗服务提供者而言，期望在自我效能感、自我管理、自主性或参与度方面短期内增强赋能可能没有依据。此外，对赋能缺乏影响并非由于未使用程序组件。
