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多发性硬化症的生活质量评估:患者与神经科医生之间的不同认知

Quality of Life Assessment in Multiple Sclerosis: Different Perception between Patients and Neurologists.

作者信息

Ysrraelit Maria C, Fiol Marcela P, Gaitán Maria I, Correale Jorge

机构信息

Institute for Neurological Research Dr. Raúl Carrea, FLENI, Buenos Aires, Argentina.

出版信息

Front Neurol. 2018 Jan 11;8:729. doi: 10.3389/fneur.2017.00729. eCollection 2017.

Abstract

BACKGROUND

In recent years, neurologists are noticing that evaluation of multiple sclerosis (MS) patients based on combining relapses, disability progression, and magnetic resonance imaging activity may be insufficient to adequately assess suboptimal responses to available therapy. Inclusion of quality of life (QoL) parameters may contribute to breach this gap.

OBJECTIVE

To evaluate agreement levels between doctor and patient perception of QoL in MS.

METHODS

A total of 700 MS patients and 300 neurologists were invited to participate in a cross-sectional study by answering an e-mail questionnaire. The survey collected information on demographical data and included the Short Form questionnaire (SF-36). After completing the questionnaire, patients were given a standard written description of each of the subdomains assessed by SF-36 and asked to identify which three were the most important determinants of their overall health-related QoL.

RESULTS

A total of 135 neurologists and 380 MS patients responded the survey. Study population mean age was 42.1 ± 10.5 years, with 61% presenting relapsing-remitting MS. SF-36 results were physical function 68.4 ± 30, physical role limitation 56.8 ± 41.7, vitality 47.6 ± 21.4, pain 71.2 ± 26.1, social function 72.6 ± 28.6, emotional role limitation 63.2 ± 39.8, mental health 60 ± 14.1, and general health 55.8 ± 22. Doctors considered physical function (75%) and physical role limitation (70%) as the most important QoL determinants in MS, followed by emotional role limitation (52%). Patients however, assigned significantly different levels of importance to physical function (58%), and physical role limitation (46%) and considered vitality (52%) more important than their physicians ( < 0.001). Important to note, the results of SF-36 questionnaire were highly correlated with the perception gap between patients and neurologists ( = 0.89;  = 0.0004).

CONCLUSION

Concerns on QoL in MS are different for patients and physicians. It is essential to enhance communication in order to better understand actual patient needs.

摘要

背景

近年来,神经科医生注意到,基于复发、残疾进展和磁共振成像活动对多发性硬化症(MS)患者进行评估,可能不足以充分评估对现有治疗的次优反应。纳入生活质量(QoL)参数可能有助于弥补这一差距。

目的

评估医生和患者对MS患者生活质量认知的一致程度。

方法

通过电子邮件问卷邀请700名MS患者和300名神经科医生参与一项横断面研究。该调查收集了人口统计学数据,并包括简短问卷(SF-36)。完成问卷后,向患者提供了由SF-36评估的每个子领域的标准书面描述,并要求他们确定哪三个是其总体健康相关生活质量的最重要决定因素。

结果

共有135名神经科医生和380名MS患者回复了调查。研究人群的平均年龄为42.1±10.5岁,其中61%表现为复发缓解型MS。SF-36结果为:身体功能68.4±30,身体角色限制56.8±41.7,活力47.6±21.4,疼痛71.2±26.1,社会功能72.6±28.6,情感角色限制63.2±39.8,心理健康60±14.1,总体健康55.8±22。医生认为身体功能(75%)和身体角色限制(70%)是MS中最重要的生活质量决定因素,其次是情感角色限制(52%)。然而,患者对身体功能(58%)和身体角色限制(46%)的重要性赋值明显不同,并认为活力(52%)比医生认为的更重要(<0.001)。值得注意的是,SF-36问卷的结果与患者和神经科医生之间的认知差距高度相关(=0.89;=0.0004)。

结论

患者和医生对MS患者生活质量的关注有所不同。加强沟通以更好地了解患者的实际需求至关重要。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/8148/5769192/d2d8ad51e0cf/fneur-08-00729-g001.jpg

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