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生活质量与儿童特应性皮炎:儿童湿疹患者的痛苦生活

Quality of life and childhood atopic dermatitis: the misery of living with childhood eczema.

作者信息

Lewis-Jones S

机构信息

Department of Dermatology, Ninewells Hospital & Medical School, Dundee, UK.

出版信息

Int J Clin Pract. 2006 Aug;60(8):984-92. doi: 10.1111/j.1742-1241.2006.01047.x.

Abstract

The misery of living with atopic eczema (syn. dermatitis, AD) cannot be overstated for it may have a profoundly negative effect on the health-related quality of life (HRQoL) of children and their family unit in many cases. As it is one of the commonest chronic relapsing childhood dermatosis (UK lifetime prevalence 16-20% by 20 years), with increasing worldwide prevalence, this has major social and financial implications for individuals, healthcare providers and society as a whole. This review explores the impact of AD on the lives of children and their family units and the use of some of the recently developed HRQoL measures, which have enabled investigation and categorisation of the physical, psychological and psycho-social effects of childhood eczema across all aspects of life. These effects include symptoms of itching and soreness, which cause sleeplessness in over 60%. Sleep deprivation leads to tiredness, mood changes and impaired psychosocial functioning of the child and family, particularly at school and work. Embarrassment, comments, teasing and bullying frequently cause social isolation and may lead to depression or school avoidance. The child's lifestyle is often limited, particularly in respect to clothing, holidays, staying with friends, owning pets, swimming or the ability to play or do sports. Restriction of normal family life, difficulties with complicated treatment regimes and increased work in caring for a child with eczema lead to parental exhaustion and feelings of hopelessness, guilt, anger and depression. The hidden costs involved in eczema management can be significant and have particular impact on lower income families. The impairment of quality of life caused by childhood eczema has been shown to be greater than or equal to other common childhood diseases such as asthma and diabetes, emphasising the importance of eczema as a major chronic childhood disease. HRQoL measures are proving to be valuable tools for use in the clinical setting, as outcome measures for pharmaceutical studies, for health economics and audit purposes. It is therefore recommended that in future, they should be used in conjunction with objective measures of severity, as part of the assessment process of a child with atopic eczema. Lack of information on eczema and treatments heightens parental anxiety. Education of all individuals involved in the care of children with eczema is fundamental in the management of AD and it is essential to provide simple clear, unambiguous information on treatment and disease management in order to reduce the negative impact on HRQoL.

摘要

特应性皮炎(同义词:皮炎,AD)患者的痛苦再怎么强调都不为过,因为在很多情况下,它可能会对儿童及其家庭的健康相关生活质量(HRQoL)产生极其负面的影响。由于它是最常见的儿童慢性复发性皮肤病之一(英国20岁时的终生患病率为16 - 20%),且全球患病率不断上升,这对个人、医疗服务提供者以及整个社会都有着重大的社会和经济影响。本综述探讨了特应性皮炎对儿童及其家庭生活的影响,以及一些最近开发的HRQoL测量方法的应用,这些方法能够对儿童湿疹在生活各个方面所产生的身体、心理和心理社会影响进行调查和分类。这些影响包括瘙痒和疼痛症状,超过60%的患者会因此失眠。睡眠不足会导致疲劳、情绪变化以及儿童和家庭心理社会功能受损,尤其是在学校和工作方面。尴尬、他人的评论、取笑和欺凌常常会导致社交孤立,并可能导致抑郁或逃避上学。孩子的生活方式往往受到限制,特别是在穿着、度假、与朋友相处、养宠物、游泳或玩耍或进行体育活动方面。正常家庭生活受到限制、复杂治疗方案带来的困难以及照顾患有湿疹孩子的工作量增加,会导致父母疲惫不堪,并产生绝望、内疚、愤怒和抑郁等情绪。湿疹管理所涉及的隐性成本可能很高,对低收入家庭影响尤其大。事实表明,儿童湿疹所导致生活质量的受损程度大于或等于哮喘和糖尿病等其他常见儿童疾病,这凸显了湿疹作为一种主要儿童慢性疾病的重要性。HRQoL测量方法已被证明是临床环境中、药物研究的结果测量、健康经济学和审计目的中很有价值的工具。因此建议,未来应将其与严重程度的客观测量方法结合使用,作为特应性皮炎患儿评估过程的一部分。关于湿疹和治疗方法的信息不足会加剧父母的焦虑。对所有参与照顾湿疹患儿的人员进行教育是特应性皮炎管理的基础,提供简单、清晰、明确的治疗和疾病管理信息对于减少对HRQoL的负面影响至关重要。

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