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多发性硬化症免疫治疗患者教育计划(PEPIMS):一项评估者盲法对照研究。

Patient education programme on immunotherapy in multiple sclerosis (PEPIMS): a controlled rater-blinded study.

作者信息

Köpke S, Kasper J, Flachenecker P, Meißner H, Brandt A, Hauptmann B, Bender G, Backhus I, Rahn A C, Pöttgen J, Vettorazzi E, Heesen C

机构信息

1 Institute of Social Medicine, University of Lübeck, Lübeck, Germany.

2 Department of Health and Caring Sciences, Faculty of Health Sciences, University of Tromsø, Tromsø, Norway.

出版信息

Clin Rehabil. 2017 Feb;31(2):250-261. doi: 10.1177/0269215516639734. Epub 2016 Jul 10.

DOI:10.1177/0269215516639734
PMID:27072153
Abstract

OBJECTIVE

To investigate the effectiveness of a multi-component evidence-based education programme on disease modifying therapies in multiple sclerosis.

DESIGN

Controlled trial with two consecutive patient cohorts and a gap of two months between cohorts.

SETTING

Three neurological rehabilitation centres.

SUBJECTS

Patients with multiple sclerosis within rehabilitation.

INTERVENTIONS

Control group (CG) participants were recruited and received standard information. Two months later, intervention group (IG) participants were recruited and received a six-hour nurse-led interactive group education programme consisting of two parts and a comprehensive information brochure.

MAIN MEASURES

Primary endpoint was "informed choice", comprising of adequate risk knowledge in combination with congruency between attitude towards immunotherapy and actual immunotherapy uptake. Further outcomes comprised risk knowledge, decision autonomy, anxiety and depression, self-efficacy, and fatigue.

RESULTS

A total of 156 patients were included (IG=75, CG=81). The intervention led to significantly more participants with informed choice (IG: 47% vs. CG: 23%, P=0.004). The rate of persons with adequate risk knowledge was significantly higher in the IG two weeks after the intervention (IG: 54% vs. CG: 31%, P=0.007), but not after six months (IG: 48% vs. CG: 31%, P=0.058). No significant differences were shown for positive attitude towards disease modifying therapy (IG: 62% vs. CG: 71%, P=0.29) and for disease modifying therapy status after six months (IG: 61.5% vs CG: 68.6%, P=0.39). Also no differences were found for autonomy preferences and decisional conflict after six months.

CONCLUSION

Delivering evidence-based information on multiple sclerosis disease modifying therapies within a rehabilitation setting led to a marked increase of informed choices.

摘要

目的

探讨多成分循证教育方案对多发性硬化症疾病改善疗法的有效性。

设计

对两个连续患者队列进行对照试验,队列之间间隔两个月。

地点

三个神经康复中心。

研究对象

正在接受康复治疗的多发性硬化症患者。

干预措施

招募对照组(CG)参与者并提供标准信息。两个月后,招募干预组(IG)参与者并接受由护士主导的为期六小时的互动式小组教育方案,该方案由两部分组成,并配有一份综合信息手册。

主要测量指标

主要终点是“知情选择”,包括足够的风险知识以及对免疫疗法的态度与实际接受免疫疗法之间的一致性。其他结果包括风险知识、决策自主性、焦虑和抑郁、自我效能感以及疲劳。

结果

共纳入156例患者(IG组75例,CG组81例)。该干预措施使做出知情选择的参与者显著增多(IG组:47% 对CG组:23%,P = 0.004)。干预后两周,IG组中具备足够风险知识的人员比例显著更高(IG组:54% 对CG组:31%,P = 0.007),但六个月后并非如此(IG组:48% 对CG组:31%,P = 0.058)。在对疾病改善疗法的积极态度方面(IG组:62% 对CG组:71%,P = 0.29)以及六个月后的疾病改善疗法状态方面(IG组:61.5% 对CG组:68.6%,P = 0.39)均未显示出显著差异。六个月后在自主性偏好和决策冲突方面也未发现差异。

结论

在康复环境中提供关于多发性硬化症疾病改善疗法的循证信息可显著增加知情选择的比例。

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