Jongen Peter Joseph, Ruimschotel Rob, Heerings Marco, Hussaarts Astrid, Duyverman Lotte, van der Zande Anneke, Valkenburg-Vissers Joyce, Wolper Hanne, van Droffelaar Maarten, Lemmens Wim, Donders Rogier, Visser Leo H
MS4 Research Institute, Ubbergseweg 34, 6522 KJ Nijmegen, The Netherlands.
Health Qual Life Outcomes. 2014 Mar 19;12:40. doi: 10.1186/1477-7525-12-40.
For persons with multiple sclerosis (MS) it is important to preserve their autonomy, in spite of increasing disability. A major factor mediating autonomy is self-efficacy. According to the social cognitive theory stressors are crucial determinants of self-efficacy, as well as the interaction with partners.
In an explorative observational study we assessed in 47 persons with MS (PwMS) the effect of an intense, multidisciplinary, 3-day, social cognitive wellness program with the participation of support partners, after 1, 3 and 6 months.
self-efficacy-control and -function (Multiple Sclerosis Self-Efficacy Scale [MSSES]),limitations to and problems with participation and autonomy (Impact on Participation and Autonomy [IPA] scale).
health-related quality of life (HRQoL) (MS Quality of Life-54 Items [MSQoL-54] questionnaire), anxiety, depression (Hospital Anxiety and Depression Scale [HADS]), and fatigue (Modified Fatigue Impact Scale-5 Items [MFIS-5]). Disability was measured with the Expanded Disability Status Scale (EDSS). Percentage changes from baseline were tested with T-tests, level of significance 0.05.
In the whole group the MSQoL-54 Mental score was increased at 1, 3 and 6 months (+16.0%, +13.2%, +12.2%), and the MSQoL-54 Physical (+10.2%) at 6 months, with no changes in other outcomes. The relapsing remitting (RR) subgroup (n = 20) had at 6 months an increase in the MSSES-Control score (+24.8%) and in the MSQoL54 Mental and Physical scores (+22.3%, +17.6%). Progressive patients (n = 22) only showed an increase in the MSQoL-54 Mental score (+11.5%) at 1 month. In the low-disability (EDSS < 4.0) subgroup the MSSES-Control score was increased (+23.8%) at 6 months, and the IPA-Limitations and -Problems scores decreased at 3 months (-6.1%, -8.8%); the MSQoL-54 Mental score had increased at 1, 3 and 6 months (+19.3%, +21.5%, +19.3%). In the high-disability (EDSS > =4.0) subgroup no significant changes occurred.
Results from this observational study suggest that 6 months after an intense, 3-day, multidisciplinary, social cognitive wellness program with support partners, PwMS with a RR course or low disability may experience an improved self-efficacy-control and HRQoL.
对于多发性硬化症(MS)患者而言,尽管残疾程度日益加重,但保持其自主性仍很重要。自我效能感是影响自主性的一个主要因素。根据社会认知理论,压力源以及与伴侣的互动是自我效能感的关键决定因素。
在一项探索性观察研究中,我们对47例多发性硬化症患者(PwMS)进行了评估,在为期3天的强化多学科社会认知健康计划中,有支持伙伴参与,分别在1个月、3个月和6个月后进行评估。
自我效能感控制和功能(多发性硬化症自我效能量表[MSSES])、参与和自主性的限制及问题(对参与和自主性的影响[IPA]量表)。
健康相关生活质量(HRQoL)(MS生活质量-54项[MSQoL-54]问卷)、焦虑、抑郁(医院焦虑抑郁量表[HADS])和疲劳(改良疲劳影响量表-5项[MFIS-5])。残疾程度用扩展残疾状态量表(EDSS)进行测量。采用T检验对与基线相比的百分比变化进行检验,显著性水平为0.05。
在整个研究组中,MSQoL-54心理得分在1个月、3个月和6个月时均有所提高(分别提高了16.0%、13.2%、12.2%),MSQoL-54身体得分在6个月时提高了10.2%,其他结局无变化。复发缓解型(RR)亚组(n = 20)在6个月时,MSSES-控制得分提高了24.8%,MSQoL54心理和身体得分分别提高了22.3%、17.6%。进展型患者(n = 22)仅在1个月时MSQoL-54心理得分有所提高(提高了11.5%)。在低残疾(EDSS < 4.0)亚组中,MSSES-控制得分在6个月时提高了23.8%,IPA-限制和-问题得分在3个月时下降(分别下降了6.1%、8.8%);MSQoL-54心理得分在1个月、3个月和6个月时均有所提高(分别提高了19.3%、21.5%、19.3%)。在高残疾(EDSS >= 4.0)亚组中未发生显著变化。
这项观察性研究结果表明,在有支持伙伴参与的为期3天的强化多学科社会认知健康计划6个月后,RR病程或低残疾的PwMS患者可能会体验到自我效能感控制和HRQoL的改善。