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马凡综合征患者的主观幸福感与医疗保健系统感知之间的关联:一项横断面研究。

Association between subjective well-being and perception of medical care system among patients with Marfan syndrome: A cross-sectional study.

机构信息

Division of Health Sciences, Osaka University Graduate School of Medicine, Suita, Osaka, Japan.

出版信息

Mol Genet Genomic Med. 2021 May;9(5):e1661. doi: 10.1002/mgg3.1661. Epub 2021 May 5.

Abstract

BACKGROUND

This study investigated the association between subjective well-being and perception for collaboration among clinical departments of adult Marfan syndrome (MFS) patients.

METHODS

We performed a self-administered questionnaire survey to ask about current medical treatment and support systems and subjective well-being for 114 patients with MFS aged 18-64 years. It was hypothesized that patients' perception of collaboration between clinical departments would raise their subjective well-being. Mean value differences were predicted by a multiple regression analysis model, with supportive medical staff, age, sex, aorta dissection, family history, marriage status, and educational background adjusted.

RESULTS

Patients' perception of collaboration between clinical departments and being married raised SWLS scores (mean difference for patients' perception of collaboration versus not = 3.41, 95% CI = 0.28, 6.53, p = .03; for married versus single = 5.22, 95% CI = 1.75, 8.69, p = .003).

CONCLUSION

Our results have suggested that it is necessary to maintain and enhance the medical treatment system with the patients for improving the subjective well-being of MFS patients. In addition, the result indicated the need for intervention to the patients themselves and also their family so that it allows patients to receive physical and emotional support from people close to them.

摘要

背景

本研究调查了成年马凡综合征(MFS)患者临床科室协作感知与主观幸福感之间的关系。

方法

我们对 114 名年龄在 18-64 岁的 MFS 患者进行了一项自我管理的问卷调查,询问他们目前的治疗和支持系统以及主观幸福感。假设患者对临床科室协作的感知会提高他们的主观幸福感。通过多元回归分析模型预测均值差异,调整了支持性医务人员、年龄、性别、主动脉夹层、家族史、婚姻状况和教育背景。

结果

患者对临床科室协作的感知以及已婚状态提高了 SWLS 评分(患者对协作的感知与非协作相比的平均差异为 3.41,95%置信区间为 0.28,6.53,p =.03;已婚与单身相比为 5.22,95%置信区间为 1.75,8.69,p =.003)。

结论

我们的研究结果表明,有必要维持和加强患者的治疗体系,以提高 MFS 患者的主观幸福感。此外,研究结果表明需要对患者本身及其家庭进行干预,以便患者能够从亲近的人那里获得身体和情感上的支持。

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本文引用的文献

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Marfan Syndrome and Quality of Life in the GenTAC Registry.GenTAC注册中心的马凡综合征与生活质量
J Am Coll Cardiol. 2017 Jun 13;69(23):2821-2830. doi: 10.1016/j.jacc.2017.04.026.

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