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神经慢性疾病患者未满足的护理需求:意大利一项关于多发性硬化症的横断面研究

Unmet care needs of people with a neurological chronic disease: a cross-sectional study in Italy on Multiple Sclerosis.

作者信息

Ponzio Michela, Tacchino Andrea, Zaratin Paola, Vaccaro Concetta, Battaglia Mario Alberto

机构信息

1 Scientific Research Area, Italian Multiple Sclerosis Foundation (FISM), Genoa, Italy.

1 Scientific Research Area, Italian Multiple Sclerosis Foundation (FISM), Genoa, Italy

出版信息

Eur J Public Health. 2015 Oct;25(5):775-80. doi: 10.1093/eurpub/ckv065. Epub 2015 Mar 30.

Abstract

BACKGROUND

Community-based studies are required to accurately describe the supportive services needed by people with multiple sclerosis (MS).

METHODS

A total of 1205 people with MS participated in a cross-sectional study evaluating their unmet health and social care needs through a questionnaire collecting information used in the study. It was specifically developed by a multi-disciplinary team.

RESULTS

Overall, 79% of the responders declared at least one health or social care needs. The most prevalent health care need was the psychological support (27.5%), whereas the transport was the social care need more frequent (over 41%) in our sample. The multivariate analysis highlighted that unmet health care needs depended mainly on clinical factors such as disease stage, influenced by disease duration, and disability degree, whereas the social care needs were related to both clinical and socio-demographic factors.

CONCLUSION

These findings suggest that MS needs significantly change over time during the disease development and to find the best way to personalize PwMS management is crucial. Moreover, more public funding directed at improving the health-related quality of life of people with MS is needed. For this reason, we think that these results will provide important information and baseline data on how to build the national service strategies thereby making healthcare planning more efficient.

摘要

背景

需要开展基于社区的研究,以准确描述多发性硬化症(MS)患者所需的支持性服务。

方法

共有1205名MS患者参与了一项横断面研究,通过一份收集研究中所用信息的问卷来评估他们未满足的健康和社会护理需求。该问卷由一个多学科团队专门编制。

结果

总体而言,79%的受访者表示至少有一项健康或社会护理需求。最普遍的健康护理需求是心理支持(27.5%),而在我们的样本中,交通是最常见的社会护理需求(超过41%)。多变量分析强调,未满足的健康护理需求主要取决于临床因素,如受疾病持续时间影响的疾病阶段和残疾程度,而社会护理需求则与临床和社会人口学因素都有关。

结论

这些发现表明,MS患者的需求在疾病发展过程中会随时间显著变化,找到个性化管理MS患者的最佳方法至关重要。此外,需要更多公共资金用于改善MS患者的健康相关生活质量。因此,我们认为这些结果将为如何制定国家服务策略提供重要信息和基线数据,从而提高医疗保健规划的效率。

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