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The relationship of dystonia and choreoathetosis with activity, participation and quality of life in children and youth with dyskinetic cerebral palsy.运动障碍型脑性瘫痪儿童和青少年中肌张力障碍及舞蹈手足徐动症与活动、参与及生活质量的关系。
Eur J Paediatr Neurol. 2017 Mar;21(2):327-335. doi: 10.1016/j.ejpn.2016.09.003. Epub 2016 Sep 23.
2
Measuring the Quality of Life of Visually Impaired Children: First Stage Psychometric Evaluation of the Novel VQoL_CYP Instrument.测量视力受损儿童的生活质量:新型VQoL_CYP工具的第一阶段心理测量评估
PLoS One. 2016 Feb 26;11(2):e0146225. doi: 10.1371/journal.pone.0146225. eCollection 2016.
3
Psychometric properties of the Autoquestionnaire Qualité de Vie Enfant Imagé (AUQEI) applied to children with cerebral palsy.应用于脑瘫儿童的儿童图像生活质量自动问卷(AUQEI)的心理测量学特性。
PLoS One. 2015 Feb 11;10(2):e0115643. doi: 10.1371/journal.pone.0115643. eCollection 2015.
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Impact of multimorbidity on disability and quality of life in the Spanish older population.多重疾病对西班牙老年人口残疾和生活质量的影响。
PLoS One. 2014 Nov 6;9(11):e111498. doi: 10.1371/journal.pone.0111498. eCollection 2014.
5
Self-reported quality of life of adolescents with cerebral palsy: a cross-sectional and longitudinal analysis.脑瘫青少年自我报告的生活质量:一项横断面和纵向分析。
Lancet. 2015 Feb 21;385(9969):705-16. doi: 10.1016/S0140-6736(14)61229-0. Epub 2014 Oct 7.
6
Influence of the environment on participation in social roles for young adults with down syndrome.环境对唐氏综合征青年成年人参与社会角色的影响。
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A retrospective study of past graduates of a residential life skills program for youth with physical disabilities.一项针对身体残疾青少年住宿生活技能项目往届毕业生的回顾性研究。
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Health-related quality of life of ambulant adults with cerebral palsy and its association with falls and mobility decline: a preliminary cross sectional study.脑瘫成年步行者的健康相关生活质量及其与跌倒和行动能力下降的关联:一项初步横断面研究。
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Cerebral palsy.脑性瘫痪。
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Physical and mental components of health-related quality of life and musculoskeletal pain sites over seven years in adults with spastic cerebral palsy.痉挛型脑瘫成人 7 年的健康相关生活质量的身心成分和肌肉骨骼疼痛部位。
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由患有脑瘫的成年人评估的生活质量。

Quality of life as assessed by adults with cerebral palsy.

作者信息

Maestro-Gonzalez Alba, Bilbao-Leon M Cruz, Zuazua-Rico David, Fernandez-Carreira Jose M, Baldonedo-Cernuda Ricardo F, Mosteiro-Diaz M Pilar

机构信息

Department of Medicine, Nursing Area, University of Oviedo, Oviedo, Spain.

Hospital Universitario Central de Asturias, Oviedo, Spain.

出版信息

PLoS One. 2018 Feb 5;13(2):e0191960. doi: 10.1371/journal.pone.0191960. eCollection 2018.

DOI:10.1371/journal.pone.0191960
PMID:29401489
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5798822/
Abstract

AIM

We explored the quality of life of adults with cerebral palsy without an intellectual disability and the predictors of quality of life.

BACKGROUND

Because cerebral palsy is a disease that manifests in childhood, much of the research into quality of life for those dealing with it focuses on children; there are few studies that evaluate the quality of life of adults with cerebral palsy. Therefore, it is important to consider their perceptions in order to improve their general wellbeing and self-determination.

DESIGN

This was a descriptive, cross-sectional study.

METHOD

Quality of life was measured using the GENCAT Quality of Life Scale. Demographic and personal variables were also collected and examined. Participants comprised 75 adults (58.7 percent men, mean age = 40.84 years) with cerebral palsy who were members of the National Cerebral Palsy Association of Spain between 2014 and 2015. A linear multivariate model was examined as well.

RESULTS

The overall mean score indicator of participants' quality of life was 103.29, which corresponds to the 56.6th percentile on the GENCAT scale. Examining the level of qualification, we found significant differences in the factors "personal development" and "self-determination," and those with a university education obtained higher scores than their less-educated counterparts. Having a partner was related to higher quality of life standard scores. After constructing a linear model, it was observed that maintaining sexual relationships was another factor that increased participants' quality of life.

CONCLUSION

This study highlights the importance of social and romantic relationships to achieve a better quality of life in adults with cerebral palsy who do not have an intellectual disability. Social integration and sexuality education programs should be developed to improve their quality of life.

摘要

目的

我们探讨了无智力障碍的成年脑瘫患者的生活质量及其生活质量的预测因素。

背景

由于脑瘫是一种在儿童期表现出来的疾病,因此针对脑瘫患者生活质量的研究大多集中在儿童身上;很少有研究评估成年脑瘫患者的生活质量。因此,考虑他们的看法对于改善他们的总体幸福感和自主决定权很重要。

设计

这是一项描述性横断面研究。

方法

使用GENCAT生活质量量表测量生活质量。还收集并检查了人口统计学和个人变量。参与者包括75名成年脑瘫患者(男性占58.7%,平均年龄 = 40.84岁),他们在2014年至2015年期间是西班牙全国脑瘫协会的成员。还检验了线性多变量模型。

结果

参与者生活质量的总体平均得分指标为103.29,这对应于GENCAT量表上的第56.6百分位。在考察学历水平时,我们发现“个人发展”和“自主决定权”因素存在显著差异,受过大学教育的人比受教育程度较低的人得分更高。有伴侣与更高的生活质量标准得分相关。构建线性模型后,观察到维持性关系是提高参与者生活质量的另一个因素。

结论

本研究强调了社会和浪漫关系对于提高无智力障碍的成年脑瘫患者生活质量的重要性。应制定社会融合和性教育计划以改善他们的生活质量。