Van Hijfte Liesbeth, Cambron Melissa, Crols Roel, De La Meilleure Gino, Govers Nelly, Vanopdenbosch Ludo, Laureys Guy, Willekens Barbara
Department of Neurology, Ghent University Hospital, Ghent, Belgium.
4Brain Research Unit, Ghent University, Ghent, Belgium.
BMC Nurs. 2025 Jan 27;24(1):94. doi: 10.1186/s12912-024-02682-6.
To explore differences in patient reported outcomes, health care resources and expenditures in persons with multiple sclerosis (pwMS) with or without access to an MS-nurse.
An observational, multicenter and cross-sectional study was conducted. Seven centers with, and twelve centers without an MS-nurse participated. The multiple sclerosis impact scale-29 (MSIS-29) was the primary outcome measure. Secondary outcome measures included: hospital anxiety and depression scale, coping measures, health-economic and disease-knowledge parameters.
Three hundred thirty-four pwMS were included, of which 196 had access to an MS-nurse. Mean age was 44.5 ± 11.4 and 69% were women. The median expanded disability status scale and patient determined disease steps were respectively 2.0 (IQR 2.5) and 2.5 (IQR 3). No statistical significant differences between centers with or without an MS-nurse were observed for the MSIS-29 (total) (mean ranks: 169.9 vs. 157.8; Z = -1.114; p = .253), depression (X²= 1,772, p = .412), anxiety (X²= 0.446, p = .800) or health expenditures. MS-disease knowledge was higher in patients followed in centers with an MS-nurse than in centers without (17.08(3.37) vs. 15.30(3.39), t(331) = 4.734, p < .001).
We did not observe clinical differences regarding HRQoL in pwMS between centers with and without an MS-nurse. Yet, we did observe a higher level of MS-specific knowledge in pwMS who had access to an MS-nurse, which may emphasize the important role of MS-nurses in educating and improving self-efficacy and adherence. Belgian registration number B300201421282.
探讨有或没有多发性硬化症护士（MS护士）服务的多发性硬化症患者（pwMS）在患者报告结局、医疗资源和支出方面的差异。
进行了一项观察性、多中心横断面研究。七个设有MS护士的中心和十二个没有MS护士的中心参与了研究。多发性硬化症影响量表-29（MSIS-29）是主要结局指标。次要结局指标包括：医院焦虑抑郁量表、应对措施、健康经济和疾病知识参数。
共纳入334例pwMS，其中196例可获得MS护士服务。平均年龄为44.5±11.4岁，69%为女性。扩展残疾状态量表中位数和患者确定的疾病阶段分别为2.0（四分位间距2.5）和2.5（四分位间距3）。在MSIS-29（总分）方面，设有或没有MS护士的中心之间未观察到统计学显著差异（平均秩次：169.9对157.8；Z=-1.114；p=0.253），抑郁（X²=1.772，p=0.412）、焦虑（X²=0.446，p=0.800）或医疗支出方面也无差异。在设有MS护士的中心接受随访的患者对MS疾病的了解程度高于没有MS护士的中心（17.0８(3.37)对15.30(3.39)，t(331)=4.734，p<0.001）。
我们未观察到设有和没有MS护士的中心在pwMS的健康相关生活质量方面存在临床差异。然而，我们确实观察到，能够获得MS护士服务的pwMS对MS特定知识的了解程度更高，这可能凸显了MS护士在教育以及提高自我效能和依从性方面的重要作用。比利时注册号B300201421282。
