Multidimensional burden

  • 文章类型: Journal Article
    背景:特应性皮炎(AD)是最常见的皮肤病之一,但是围绕这种疾病对生活质量(QoL)的影响存在许多知识空白,心理健康,和管理AD所涉及的自付费用。关于AD多维负担的现有科学证据通常基于患者自己报告的测量研究。
    方法:在这种情况下,MEASURE-AD试验是作为一个横截面,多中心,多国试验使用患者和医生报告的措施来描述成人中重度AD患者AD的多维负担。
    结果:本文介绍了西班牙队列的结果。我们发现,患有中度至重度AD和高EASI评分(21.1-72)的西班牙成年人的疾病负担显着增加,高度严重的症状,如瘙痒和睡眠障碍,心理健康和QoL受损,提高医疗资源的利用率,与EASI评分较低(0-7或7.1-21)的患者相比,自付费用更多。
    结论:这项研究提供了更好地了解疾病负担的信息,并确定AD管理中需要改进的方面。
    BACKGROUND: Atopic dermatitis (AD) is one of the most prevalent skin diseases, but there are numerous knowledge gaps surrounding the impact this disease has on quality of life (QoL), mental health, and out-of-pocket expenses involved in the management of AD. The available scientific evidence on the multidimensional burden of AD is usually based on studies with measures reported by patients themselves.
    METHODS: In this context, the MEASURE-AD trial was developed as a cross-sectional, multicenter, multinational trial using patient- and physician-reported measures to characterize the multidimensional burden of AD in adults with moderate-to-severe AD.
    RESULTS: This paper presents the results of the Spanish cohort. We found that Spanish adults with moderate-to-severe AD and high EASI score (21.1-72) had a significantly increased disease burden, high severity of symptoms such as itch and sleep disturbances, impaired mental health and QoL, higher use of health care resources, and more out-of-pocket expenses than patients with low EASI scores (0-7 or 7.1-21).
    CONCLUSIONS: This study provides information to better understand disease burden, and identify aspects to be improved in the management of AD.
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  • 文章类型: Journal Article
    在TGE(严重儿童创伤性脑损伤)纵向研究中,主要家庭照顾者(PFC)报告的负担7年后。
    主观负担是用36个PFC(父母)的Zarit负担清单(ZBI)估算的,对自己的健康状况进行评级的人(医学成果研究简表-12),家庭功能及其子女的护理和需求水平(儿科/成人护理和需求量表[PCANS/CANS])。数据收集包括:儿童和PFC社会人口统计学特征,伤害相关因素,“目标”(例如,总体残疾水平:格拉斯哥结果量表-扩展,GOS-E/GOS-E-Peds)和“主观”结果(例如参与,行为,执行功能,生活质量和疲劳)。
    25%的PFC报告轻度-中度负担,和19%的中度-重度负担。在所有“主观”PFC评级结果中,较高的负担与较差的结果相关,并自我报告参与。ZBI与CANS/PCANS和GOS-E/GOS-E-Peds密切相关。总体残疾水平和PFC报告的执行功能解释了ZBI差异的62%。对于同等水平的残疾,当PFC报告他们孩子的“负面”照片时,负担更高。
    伤后7年的重大PFC报告负担与总体残疾和“主观”PFC评估结果相关。应确定长期影响父母负担的因素,并随着时间的推移实施心理支持。
    UNASSIGNED: To investigate reported burden by the Primary Family Caregiver (PFC) 7-years after severe pediatric traumatic brain injury in the TGE (Traumatisme Grave de l\'Enfant) longitudinal study.
    UNASSIGNED: Subjective burden was estimated with the Zarit Burden Inventory (ZBI) in 36 PFC (parents), who rated their own health status (Medical Outcome Study Short Form-12), family functioning and their child\'s level of care and needs (Pediatric/Adult Care And Needs Scale [PCANS/CANS]). Data collection included: child and PFC sociodemographic characteristics, injury-related factors, \'objective\' (e.g. overall level of disability: Glasgow Outcome Scale - Extended, GOS-E/GOS-E-Peds) and \'subjective\' outcomes (e.g. participation, behavior, executive functions, quality of life and fatigue).
    UNASSIGNED: 25% of PFC reported mild-moderate burden, and 19% moderate-severe burden. Higher burden correlated with worse outcomes in all \'subjective\' PFC-rated outcomes, and with self-reported participation. The ZBI correlated strongly with CANS/PCANS and GOS-E/GOS-E-Peds. Overall level of disability and PFC-reported executive functioning explained 62% of the ZBI variance. For equal levels of disability, burden was higher when PFC reported a \'negative\' picture of their child.
    UNASSIGNED: Significant PFC-reported burden 7-years post-injury was associated with overall disability and \'subjective\' PFC-rated outcomes. Factors influencing parental burden in the long term should be identified and psychological support implemented over time.
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