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提高多发性硬化症复发管理决策自主性的患者教育项目:一项随机对照试验。

Patient education program to enhance decision autonomy in multiple sclerosis relapse management: a randomized-controlled trial.

作者信息

Köpke S, Kasper J, Mühlhauser I, Nübling M, Heesen C

机构信息

Unit of Health Sciences and Education, University of Hamburg, Hamburg, Germany.

出版信息

Mult Scler. 2009 Jan;15(1):96-104. doi: 10.1177/1352458508095921. Epub 2008 Oct 9.

Abstract

BACKGROUND

Contrary to strong recommendations for high-dose intravenous corticosteroid treatment for relapses in multiple sclerosis (MS), uncertainty remains about most aspects of relapse management. Oral corticosteroids administered by physicians or patients themselves or no corticosteroids also appear justifiable.

OBJECTIVE

To evaluate an education program that aims to involve patients with MS in decisions on relapse management.

METHODS

In three German MS centers, 150 patients with relapsing MS were randomly assigned to a single, 4-h group session or a standard information leaflet. The primary outcome measure was the proportion of relapses with oral or no corticosteroid therapy as an indicator of patient autonomy in treatment decision making. Other outcomes included perceived decision autonomy, quality of life, and disability status.

RESULTS

In the intervention group (IG), 108/139 (78%) relapses were treated with oral or no corticosteroids compared with 101/179 (56%) in the control group; P < 0.0001. Patients' perceived autonomy of treatment decision making was significantly higher in the IG; P < 0.0001. Quality of life, disability status, and adverse events of corticosteroid therapies were comparable.

CONCLUSION

The patient education program led to more autonomous decision making in patients with relapsing MS. Relevant changes in relapse management were observed.

摘要

背景

与针对多发性硬化症(MS)复发采用大剂量静脉注射皮质类固醇治疗的强烈建议相反,复发管理的大多数方面仍存在不确定性。由医生或患者自行给予口服皮质类固醇或不使用皮质类固醇似乎也有其合理性。

目的

评估一项旨在让MS患者参与复发管理决策的教育计划。

方法

在德国的三个MS中心,150例复发型MS患者被随机分配至一个时长4小时的小组课程或一份标准信息手册。主要结局指标是以口服或不使用皮质类固醇治疗的复发比例作为治疗决策中患者自主性的指标。其他结局包括感知到的决策自主性、生活质量和残疾状况。

结果

干预组(IG)中,108/139例(78%)复发采用口服或不使用皮质类固醇治疗,而对照组为101/179例(56%);P<0.0001。IG组患者感知到的治疗决策自主性显著更高;P<0.0001。生活质量、残疾状况以及皮质类固醇治疗的不良事件具有可比性。

结论

该患者教育计划使复发型MS患者的决策更具自主性。观察到复发管理方面的相关变化。

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