Miyamoto Samira T, Valim Valéria, Fisher Benjamin A
Department of Integrated Education in Health, Universidade Federal do Espírito Santo, Vitória, Brazil.
Department of Medical Clinic, Universidade Federal do Espírito Santo, Vitória, Brazil.
Rheumatology (Oxford). 2021 Jun 18;60(6):2588-2601. doi: 10.1093/rheumatology/key370.
Health-related quality of life (HRQoL) has an increasing role in medical decision-making. This review of the literature aims to provide an overview on HRQoL, costs, and work disability in SS, a disease characterized by focal lymphocytic infiltration of exocrine glands with no therapeutics of proven immunomodulatory potential. HRQoL is markedly reduced in SS in multiple studies across many countries when compared with HRQoL in healthy controls. The reduction in HRQoL is similar to that observed in other chronic diseases such as RA, SLE, FM and, interestingly, non-SS sicca syndrome. Impaired HRQoL in SS has been found to be associated with fatigue, pain/articular involvement, ocular and oral involvement, pruritus, sexual dysfunction, impaired sleep, pulmonary manifestations, psychological dysfunction and impaired physical function. Until now, no therapeutic has been shown to improve HRQoL in an adequately powered double-blind, placebo-controlled randomized controlled trial. Although primary SS does not, in general, impair life expectancy and is often inappropriately considered a benign 'nuisanvce' disease for those patients without systemic manifestations, the associated costs and work disability are striking. This, together with the significant reduction in HRQoL, strongly argues for the development of new therapeutic approaches to manage this neglected disease.
健康相关生活质量（HRQoL）在医疗决策中发挥着越来越重要的作用。本文献综述旨在概述干燥综合征（SS）的健康相关生活质量、成本和工作能力丧失情况。SS是一种以外分泌腺局灶性淋巴细胞浸润为特征的疾病，目前尚无经证实具有免疫调节潜力的治疗方法。与健康对照者的健康相关生活质量相比，多项跨国研究表明，SS患者的健康相关生活质量显著降低。健康相关生活质量的降低程度与类风湿关节炎（RA）、系统性红斑狼疮（SLE）、纤维肌痛（FM）等其他慢性疾病相似，有趣的是，与非SS性口干眼干综合征也相似。研究发现，SS患者健康相关生活质量受损与疲劳、疼痛/关节受累、眼和口腔受累、瘙痒、性功能障碍、睡眠障碍、肺部表现、心理功能障碍及身体功能受损有关。到目前为止，在一项足够有力的双盲、安慰剂对照随机对照试验中，尚未有治疗方法被证明能改善健康相关生活质量。虽然原发性SS一般不会影响预期寿命，对于那些没有全身表现的患者，它常常被不恰当地视为一种良性的“麻烦”疾病，但与之相关的成本和工作能力丧失却很惊人。这一点，再加上健康相关生活质量的显著下降，有力地支持了开发新的治疗方法来应对这种被忽视疾病的观点。
