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系统性硬化症患者手部家庭康复方案的评估。

The evaluation of a home-based program for hands in patients with systemic sclerosis.

机构信息

Department of Internal Medicine and Rheumatology, Faculty of Medical Sciences, University of Campinas-Unicamp, Campinas, São Paulo, Brazil.

Department of Orthopedics and Rheumatology, Clinical Hospital of the State University of Campinas - Unicamp, Campinas, São Paulo, Brazil.

出版信息

J Hand Ther. 2019 Jul-Sep;32(3):313-321. doi: 10.1016/j.jht.2017.10.013. Epub 2017 Dec 1.

Abstract

STUDY DESIGN

This study used a quasi-experimental design where patients were evaluated before and after participation in the self-management program.

INTRODUCTION

Hands are commonly affected in systemic sclerosis (SSc). Strategies to maintain or improve hand function are indicated upon diagnosis and throughout the course of the disease.

PURPOSE OF THE STUDY

The purpose of this study was to develop and evaluate a home-based program for hands in patients with SSc.

METHODS

A home-based self-management program that consisted of concise instructions about SSc and hand exercises was developed and evaluated in a group of patients with SSc during 8 weeks. Primary outcome measures were hand pain (Visual Analogue Scale) and hand function (Cochin Hand Function Scale). Secondary outcome measures were disability (Scleroderma Health Assessment Questionnaire), finger motion (delta finger-to-palm), grip strength, tip and key pinch strength, Raynaud phenomenon and digital ulcers impact, quality of life (Short Form Health Survey). For comparisons between different times analysis of variance for repeated measures was used. To calculate the effect size (ES), the Cohen's test was performed. To evaluate skin moisturizing and warming habits before and after intervention, the McNemar test was used. Statistical significance was set at P ≤ .05.

RESULTS

Twenty-two SSc patients (19 women: 3 men; 16 limited scleroderma: 6 diffuse scleroderma) completed the program. Significant improvements were noted for hand pain (3.97 vs 2.21, ES: 0.69), Cochin Hand Function Scale (19.24 vs 12.48, ES: 0.48), Scleroderma Health Assessment Questionnaire (0.95 vs 0.48, ES: 1.01), delta finger-to-palm (92.86 vs 106.33, ES: 0.40), grip strength (14.43 vs 19, ES: 0.58), tip pinch strength (2.49 vs 4.18, ES: 1.15), key pinch strength (4.01 vs 5.22, ES: 0.76), Raynaud phenomenon impact (0.94 vs 0.47, ES: 0.75), Short Form Health Survey-role physical (47.38 vs 60.14, ES: 0.61), physical functioning (34.62 vs 61.9, ES: 0.18), social functioning (60.71 vs 75.6, ES: 0.64), bodily pain (50.55 vs 63.38, ES: 0.58), vitality (45.95 vs 62, ES: 2.22), mental health (56.62 vs 72.38, ES: 0.84) moisturizing, and cold avoidance habits. Patients considered the program easy to follow with no adverse effects related to exercises.

DISCUSSION

We developed a home based hand care program to be offered to SSc patients. Improvements in hand function, strength, disability, motion, and overall quality of life were independent of age, income, education level, disease duration, and skin score. Our findings support those of other studies that reported the benefits of hand exercises in SSc. Some study limitations include the lack of a control group, the small number of subjects and the short-time follow up.

CONCLUSIONS

This home-based program for patients with SSc improved hand pain, function, mobility, and strength at the end of 8 weeks. Patient adherence and sustained efficacy is still to be determined.

摘要

研究设计

本研究采用准实验设计,在患者参与自我管理计划前后进行评估。

简介

系统性硬化症(SSc)常累及手部。一旦确诊,应采取策略来维持或改善手部功能,并贯穿疾病始终。

研究目的

本研究旨在开发和评估一种适用于 SSc 患者手部的家庭自我管理方案。

方法

我们开发了一种基于家庭的自我管理方案,其中包含有关 SSc 和手部运动的简明说明,并在一组 SSc 患者中进行了 8 周的评估。主要结局指标为手部疼痛(视觉模拟量表)和手部功能(科钦手部功能量表)。次要结局指标为残疾(硬皮病健康评估问卷)、手指运动(指蹼到手掌的距离)、握力、指尖和钥匙握力、雷诺现象和手指溃疡影响、生活质量(简明健康调查量表)。为了比较不同时间点的差异,我们使用了重复测量的方差分析。为了计算效应大小(ES),我们进行了 Cohen's 检验。为了评估干预前后皮肤保湿和保暖习惯,我们使用了 McNemar 检验。统计学意义设定为 P ≤.05。

结果

22 名 SSc 患者(19 名女性:3 名男性;16 名局限性硬皮病:6 名弥漫性硬皮病)完成了该方案。手部疼痛(3.97 分 vs 2.21 分,ES:0.69)、科钦手部功能量表(19.24 分 vs 12.48 分,ES:0.48)、硬皮病健康评估问卷(0.95 分 vs 0.48 分,ES:1.01)、指蹼到手掌的距离(92.86 分 vs 106.33 分,ES:0.40)、握力(14.43 分 vs 19 分,ES:0.58)、指尖握力(2.49 分 vs 4.18 分,ES:1.15)、钥匙握力(4.01 分 vs 5.22 分,ES:0.76)、雷诺现象影响(0.94 分 vs 0.47 分,ES:0.75)、简明健康调查量表-角色身体(47.38 分 vs 60.14 分,ES:0.61)、身体机能(34.62 分 vs 61.9 分,ES:0.18)、社会功能(60.71 分 vs 75.6 分,ES:0.64)、身体疼痛(50.55 分 vs 63.38 分,ES:0.58)、活力(45.95 分 vs 62 分,ES:2.22)、心理健康(56.62 分 vs 72.38 分,ES:0.84)等方面均有显著改善。患者认为该方案易于遵循,且无与运动相关的不良反应。

讨论

我们开发了一种基于家庭的手部护理方案,供 SSc 患者使用。手部功能、力量、残疾、运动和整体生活质量的改善与年龄、收入、教育水平、疾病持续时间和皮肤评分无关。我们的研究结果与其他报道手部运动对 SSc 有益的研究结果一致。研究存在一些局限性,包括缺乏对照组、研究对象数量少以及随访时间短。

结论

本研究为 SSc 患者提供的家庭自我管理方案在 8 周后可改善手部疼痛、功能、活动度和力量。患者的依从性和持续疗效仍有待确定。

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