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银屑病患者终生累积的生活损害:患者对疾病相关损害的终生感知。

Cumulative life course impairment in psoriasis: patient perception of disease-related impairment throughout the life course.

机构信息

Dermatological Sciences, The University of Manchester, Manchester Academic Health Sciences Centre, Salford Royal Foundation Trust, Manchester, UK.

出版信息

Br J Dermatol. 2011 May;164 Suppl 1:1-14. doi: 10.1111/j.1365-2133.2011.10280.x.

DOI:10.1111/j.1365-2133.2011.10280.x
PMID:21477010
Abstract

Psoriasis is associated with significant physical, psychological, social and economic burden, the cumulative effect of which may result in failure to achieve 'full life potential' in some patients, termed 'cumulative life course impairment' (CLCI). In this concept, the burden of stigmatization, and physical and psychological comorbidities (risk factors for cumulative impairment) and coping strategies and external factors (having potential moderating effects), interact to cause lifetime impairment. Components of CLCI are supported by cross-sectional data; however, the cumulative nature of impairment in patients with psoriasis is not yet established. Nonetheless, CLCI makes intuitive sense to many dermatologists who recognize the cumulative impact of psoriasis on the lives of some patients. This supplement explores the causes and mechanisms of CLCI qualitatively by presenting cases which are representative of typical patients with moderate-to-severe psoriasis. These cases demonstrate the effect of psoriasis in influencing major life-changing decisions and altering the course of patients' lives, preventing patients from attaining their life goals, pursuing their chosen career, gaining a desired educational level, developing social relationships, gaining full pleasure from family life or having children. All these patients believe that their lives would have taken a different course had they not had psoriasis. Additional research to determine how CLCI occurs and to identify the risk factors for cumulative impairment is required. Understanding the key risk factors for CLCI may help physicians identify patients who are more vulnerable to the cumulative impact of psoriasis, resulting in more appropriate treatment decisions earlier in the disease course.

摘要

银屑病会给患者带来沉重的身心负担、社会压力和经济负担,这些负担累加起来可能会导致部分患者无法实现“人生的全部潜能”,这种现象被称为“累积性终生损害”(CLCI)。在这一概念中,污名化、身心共病(累积损害的风险因素)以及应对策略和外部因素(可能具有调节作用)的负担相互作用,导致了终生损害。CLCI 的各个组成部分都有横断面数据支持;然而,银屑病患者的累积损害的累积性质尚未确定。尽管如此,许多皮肤科医生都认为 CLCI 很有意义,因为他们认识到银屑病对一些患者生活的累积影响。本增刊通过展示具有代表性的中重度银屑病患者的病例,从定性角度探讨了 CLCI 的病因和机制。这些病例说明了银屑病对影响重大人生决策和改变患者生活轨迹的作用,使患者无法实现人生目标、追求理想职业、获得理想教育水平、发展社交关系、充分享受家庭生活或生育。所有这些患者都认为,如果没有银屑病,他们的生活可能会走上另一条道路。需要进一步研究以确定 CLCI 的发生机制和累积损害的风险因素。了解 CLCI 的关键风险因素可能有助于医生识别出更容易受到银屑病累积影响的患者,从而在疾病早期做出更恰当的治疗决策。

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