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一项基于证据的多发性硬化症疲劳管理患者教育项目的开发与可行性研究:“MS 疲劳管理”项目(FatiMa)

Development and Feasibility of an Evidence-Based Patient Education Program for Managing Fatigue in Multiple Sclerosis: The "Fatigue Management in MS" Program (FatiMa).

作者信息

Wendebourg Maria Janina, Feddersen Lena Katharina, Lau Stephanie, Köpke Sascha, Moss-Morris Rona, Heesen Christoph, Pöttgen Jana

机构信息

Institute of Neuroimmunology and Department of Neurology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany (MJW, LKF, SL, CH, JP); Nursing Research Unit, Institute of Social Medicine, University of Lübeck, Lübeck, Germany (SK); and Health Psychology Section, Institute of Psychiatry, King's College London, London, UK (RM-M).

出版信息

Int J MS Care. 2016 May-Jun;18(3):129-37. doi: 10.7224/1537-2073.2014-105.


DOI:10.7224/1537-2073.2014-105
PMID:27252600
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC4886999/
Abstract

BACKGROUND: Multiple sclerosis (MS) is an inflammatory and neurodegenerative disease of the central nervous system. Fatigue is a common and disabling symptom, often causing decreased quality of life, social withdrawal, and unemployment. We developed and studied the feasibility of a cognitive-behavioral group intervention to manage fatigue in MS. We aimed to integrate the concepts of cognitive-behavioral therapy and evidence-based patient information. METHODS: We conducted patient interviews and a focus group to assess patients' interest in and need for fatigue self-management training and developed the program accordingly. The program consists of six 90-minute modules, which were structured with the use of moderation cards, helping to guarantee treatment fidelity. The program was tested on three pilot groups (N = 16) in a rehabilitation center. Fatigue, depression, and coping self-efficacy were assessed at baseline and after the intervention. Acceptance and general satisfaction with the program were also evaluated. RESULTS: Patient interviews elicited different characteristics of fatigue, suggesting that patients had different requirements. The program was very acceptable to patients. Pre-post assessments of the pilot study showed significantly improved scores on the Coping Self-Efficacy Scale (P = .013) but not on the Fatigue Scale for Motor and Cognitive Functions and the 30-item Inventory of Depressive Symptomatology. CONCLUSIONS: These preliminary results suggest that this program is a feasible cognitive-behavioral group training program that may improve coping self-efficacy and has the potential to subsequently reduce fatigue. The next step is evaluation of the program in a randomized controlled trial.

摘要

背景:多发性硬化症(MS)是一种中枢神经系统的炎症性和神经退行性疾病。疲劳是一种常见且使人衰弱的症状,常导致生活质量下降、社交退缩和失业。我们开发并研究了一种认知行为团体干预措施来管理MS患者的疲劳。我们旨在整合认知行为疗法的概念和基于证据的患者信息。 方法:我们进行了患者访谈和焦点小组讨论,以评估患者对疲劳自我管理培训的兴趣和需求,并据此制定了该项目。该项目由六个90分钟的模块组成,使用调节卡进行结构化设计,有助于确保治疗的保真度。该项目在一家康复中心的三个试点组(N = 16)中进行了测试。在基线和干预后评估疲劳、抑郁和应对自我效能感。还评估了患者对该项目的接受程度和总体满意度。 结果:患者访谈揭示了疲劳的不同特征,表明患者有不同的需求。该项目很受患者欢迎。试点研究的前后评估显示,应对自我效能量表的得分显著提高(P = .013),但运动和认知功能疲劳量表以及30项抑郁症状量表的得分没有提高。 结论:这些初步结果表明,该项目是一个可行的认知行为团体培训项目,可能会提高应对自我效能感,并有可能随后减轻疲劳。下一步是在随机对照试验中对该项目进行评估。

相似文献

[1]
Development and Feasibility of an Evidence-Based Patient Education Program for Managing Fatigue in Multiple Sclerosis: The "Fatigue Management in MS" Program (FatiMa).

Int J MS Care. 2016

[2]
Managing Neuropsychological Impairment in Multiple Sclerosis: Pilot Study on a Standardized Metacognitive Intervention.

Int J MS Care. 2015

[3]
Three-week inpatient energy management education (IEME) for persons with multiple sclerosis-related fatigue: Feasibility of a randomized clinical trial.

Mult Scler Relat Disord. 2019-6-29

[4]
Moderators of Treatment Outcomes After Telehealth Self-Management and Education in Adults With Multiple Sclerosis: A Secondary Analysis of a Randomized Controlled Trial.

Arch Phys Med Rehabil. 2018-1-11

[5]
Erratum.

Mult Scler. 2016-10

[6]
Development and feasibility of the Help to Overcome Problems Effectively (HOPE) self-management intervention for people living with multiple sclerosis.

Disabil Rehabil. 2017-6

[7]
Development and Preliminary Evaluation of a 3-Week Inpatient Energy Management Education Program for People with Multiple Sclerosis-Related Fatigue.

Int J MS Care. 2019

[8]
Improving fatigue in multiple sclerosis by smartphone-supported energy management: The MS TeleCoach feasibility study.

Mult Scler Relat Disord. 2018-3-27

[9]
A combined inspiratory and expiratory muscle training program improves respiratory muscle strength and fatigue in multiple sclerosis.

Arch Phys Med Rehabil. 2013-5-25

[10]
Neuropsychological management of multiple sclerosis: evaluation of a supervised and customized cognitive rehabilitation program for self-used at home (SEPIA): protocol for a randomized controlled trial.

Trials. 2019-10-29

引用本文的文献

[1]
Experiences of people with multiple sclerosis and clinicians in using cognitive behavioural therapies for hidden symptoms: a systematic review and meta-aggregation.

J Neurol. 2024-3

[2]
Patient Satisfaction and Perspectives on Self-Management Education Programs: A Qualitative Study.

Patient Prefer Adherence. 2023-9-1

[3]
Nursing Interventions Focusing on Self-efficacy for Patients With Multiple Sclerosis in Rehabilitation: A Systematic Review.

Int J MS Care. 2022

[4]
Occupational Therapy-Based Energy Management Education in People with Post-COVID-19 Condition-Related Fatigue: Results from a Focus Group Discussion.

Occup Ther Int. 2022

[5]
Effects of Sensory Interventions on Fatigue in People With Multiple Sclerosis: A Systematic Review.

Int J MS Care. 2022

[6]
High-intensity interval training and energy management education, compared with moderate continuous training and progressive muscle relaxation, for improving health-related quality of life in persons with multiple sclerosis: study protocol of a randomized controlled superiority trial with six months' follow-up.

BMC Neurol. 2021-2-11

[7]
Development and Preliminary Evaluation of a 3-Week Inpatient Energy Management Education Program for People with Multiple Sclerosis-Related Fatigue.

Int J MS Care. 2019

本文引用的文献

[1]
Diagnostic accuracy for major depression in multiple sclerosis using self-report questionnaires.

Brain Behav. 2015-9

[2]
Managing Neuropsychological Impairment in Multiple Sclerosis: Pilot Study on a Standardized Metacognitive Intervention.

Int J MS Care. 2015

[3]
Meta-analysis of three different types of fatigue management interventions for people with multiple sclerosis: exercise, education, and medication.

Mult Scler Int. 2014

[4]
Symptoms, prevalence and impact of multiple sclerosis in younger patients: a multinational survey.

Neuroepidemiology. 2014-5-7

[5]
Coping and its importance for quality of life in patients with multiple sclerosis.

Disabil Rehabil. 2014

[6]
A pragmatic parallel arm multi-centre randomised controlled trial to assess the effectiveness and cost-effectiveness of a group-based fatigue management programme (FACETS) for people with multiple sclerosis.

J Neurol Neurosurg Psychiatry. 2013-5-21

[7]
Unemployment in multiple sclerosis: the contribution of personality and disease.

Mult Scler. 2011-12-19

[8]
Implementation of a patient education program on multiple sclerosis relapse management.

Patient Educ Couns. 2011-4-19

[9]
Diagnostic criteria for multiple sclerosis: 2010 revisions to the McDonald criteria.

Ann Neurol. 2011-2

[10]
Multiple sclerosis-associated fatigue.

Expert Rev Neurother. 2010-9

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