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提高多发性硬化症青年患者的生活质量:一项共同创建的综合干预措施的试点研究。

Fostering quality of life in young adults living with multiple sclerosis: a pilot study of a co-created integrated intervention.

作者信息

Poli Silvia, Donisi Valeria, Mazzi Maria Angela, Gobbin Francesca, Giusto Giorgia, Orlandi Riccardo, Schena Federico, Del Piccolo Lidia, das Nair Roshan, Gajofatto Alberto, Rimondini Michela

机构信息

Section of Clinical Psychology, Department of Neuroscience, Biomedicine and Movement Science, University of Verona, Verona, Italy.

Section of Neurology, Department of Neuroscience, Biomedicine and Movement Science, University of Verona, Verona, Italy.

出版信息

Front Psychol. 2024 Mar 26;15:1342166. doi: 10.3389/fpsyg.2024.1342166. eCollection 2024.

Abstract

INTRODUCTION

Multiple sclerosis (MS) is generally diagnosed at an early age, making the acceptance of this chronic disease challenging. Research dedicated to young adults with MS (YawMS) is still limited. A biopsychosocial co-created intervention for YawMS integrating social, physical and psychological activities was developed (ESPRIMO intervention) in order to improve the quality of life (QoL) and well-being. This pre-post intervention assessment study examines the feasibility of the ESPRIMO intervention and its signal of efficacy.

METHODS

Inclusion criteria were: age 18-45 years, MS diagnosis, Expanded Disability Status Scale score < 3.5. After giving informed consent, YawMS completed a battery of questionnaires, which was repeated after the intervention. The battery included a bespoke feasibility scale, the COOP/WONCA charts, and the Short Form-12 Health Survey (SF-12).

RESULTS

Fifty-three YAwMS were enrolled and 43 (81.1%) completed the intervention. The majority of the sample positively rated the pleasantness, usefulness and feasibility of the intervention. A significant change in the COOP/WONCA "general QoL" chart ( = 3.65;  < 0.01) and SF-12 mental wellbeing component ( = -3.17;  < 0.01) was found.

DISCUSSION

ESPRIMO is an innovative intervention that is feasible; preliminary results show an improvement in QoL and mental wellbeing. Further studies are needed to test its efficacy and evaluate future implementation in health services.: ClinicalTrials.gov, NCT04431323.

摘要

引言

多发性硬化症(MS)通常在早年被诊断出来,这使得接受这种慢性疾病具有挑战性。针对患有MS的年轻人(YawMS)的研究仍然有限。为了提高生活质量(QoL)和幸福感,开发了一种将社会、身体和心理活动整合在一起的针对YawMS的生物心理社会共同创建的干预措施(ESPRIMO干预)。这项干预前后评估研究考察了ESPRIMO干预的可行性及其疗效信号。

方法

纳入标准为:年龄18 - 45岁,MS诊断,扩展残疾状态量表评分<3.5。在获得知情同意后,YawMS完成了一系列问卷,干预后重复进行。该系列问卷包括一个定制的可行性量表、COOP/WONCA图表和简短健康调查-12(SF - 12)。

结果

招募了53名YawMS,43名(81.1%)完成了干预。大多数样本对干预的愉悦性、有用性和可行性给予了积极评价。发现COOP/WONCA“总体生活质量”图表有显著变化(=3.65;<0.01)以及SF - 12心理健康成分有显著变化(= - 3.17;<0.01)。

讨论

ESPRIMO是一种可行的创新干预措施;初步结果显示生活质量和心理健康有所改善。需要进一步研究来测试其疗效并评估未来在卫生服务中的实施情况。:ClinicalTrials.gov,NCT04431323 。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b9be/11002131/b333f2b0d04e/fpsyg-15-1342166-g001.jpg

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