EVASEP:一项描述神经科医生、患者和护理人员对护理人员在支持接受皮下干扰素β 1a治疗的多发性硬化症患者中的作用的非介入性研究。

IF 2.2 Q3 CLINICAL NEUROLOGY Multiple Sclerosis International Pub Date : 2016-01-01 Epub Date: 2016-08-01 DOI:10.1155/2016/4986073
Cécile Donzé, Bruno Lenne, Anne-Sophie Jean Deleglise, Christian Kempf, Yasmine Bellili, Patrick Hautecoeur
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引用次数: 4

摘要

背景。认识到照顾者对多发性硬化症(MS)患者的作用很重要,但研究很少,特别是在低残疾水平的患者中。目标。从护理者、患者和神经科医生的角度描述对护理者角色的看法。方法。这项观察性研究是在法国对接受皮下(SC)干扰素-β-1a (IFN-β-1a)治疗超过24个月的复发缓解型MS患者进行的。结果。护理人员、患者和神经科医生都认为提供精神支持和与疾病作斗争是护理人员最重要的角色。护理人员认为精神支持比患者和神经科医生更重要(p = 0.002),护理人员认为他们在帮助患者对抗疾病方面的作用比神经科医生更重要(p = 0.006)。在支持提供者中,疾病知识和可用治疗方法的重要性低于患者(p = 0.007和p = 0.001)。结论。在对MS患者护理人员角色的认知中,有许多未满足的需求需要解决,以便为患者提供最有效的护理方案,并支持支持提供者的需求。
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EVASEP: A Noninterventional Study Describing the Perception of Neurologists, Patients, and Caregivers on Caregivers' Role in the Support of Patients Suffering from Multiple Sclerosis Treated with Subcutaneous Interferon Beta 1a.

Background. The perception of the role of caregivers for people with multiple sclerosis (MS) is important but poorly studied, particularly in patients with low levels of disability. Objectives. To describe the perceptions of the role of caregivers from the perspective of the caregiver, the patient, and neurologists. Methods. This observational study was conducted in France on patients with relapsing remitting MS treated with subcutaneous (SC) interferon-β-1a (IFN-β-1a) for more than 24 months. Results. Caregiver, patients, and neurologists all considered providing moral support and fighting against the disease as the most important role of the care provider. Moral support was considered significantly more important by caregivers than the patients and neurologists (p = 0.002) and caregivers considered their role in helping patients to fight disease more important than did the neurologists (p = 0.006). Knowledge of disease and available treatments were less important among support providers than patients (p = 0.007 and p = 0.001). Conclusion. There are many unmet needs in the perception of the role of caregivers for people with MS which need to be addressed to deliver the most effective care package for patients and to support the needs of the support provider.

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来源期刊
Multiple Sclerosis International
Multiple Sclerosis International CLINICAL NEUROLOGY-
自引率
0.00%
发文量
6
审稿时长
15 weeks
期刊介绍: Multiple Sclerosis International is a peer-reviewed, Open Access journal that publishes original research articles, review articles, and clinical studies related to all aspects of multiple sclerosis, including clinical neurology, neuroimaging, neuropathology, therapeutics, genetics, neuroimmunology, biomarkers, psychology and neurorehabilitation.
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