PDF(Pubmed)
Abstract：
Health-related quality of life is a key contributor to overall well-being, and this is becoming an increasingly prominent factor when making therapeutic choices in the management of ANCA-associated vasculitis (AAV). Progress in available therapeutic strategies for AAV has resulted in this historically acute disease with a potentially fatal short-term outcome, becoming a relapsing-remitting chronic disorder. This new perspective on AAV means that patient survival should no longer be considered as the only major treatment target. Additional outcomes in this context that should be portrayed in order to consider a therapeutic approach as successful include patient quality of life, as well as the burden of treatment-induced morbidity. Comorbidities and impaired quality of life in patients with AAV, as with many other autoimmune diseases, may be a consequence of the disease itself as well as a result of the therapy employed. The AAV disease process may induce organ damage, including kidney failure and structural lung damage, and increase the risk of cardiovascular disease. On top of this, treatments employed to manage the disease may contribute further to the overall comorbidities burden. Furthermore, pre-existing comorbidities can increase AAV severity and may also be contraindications that limit potential therapeutic options. Quality of life is another central topic that can have a huge impact on patient wellbeing as well as adherence to treatment. Ongoing monitoring of comorbidity risk and of quality of life is thus key for successful AAV management. This process, however, may be complicated; the identification of the correct parameters on which to focus is not always straightforward and, more importantly, it is sometimes the symptoms that may appear trivial to physicians that are most detrimental to a patient\'s quality of life. With these shifts in treatment capabilities and understanding of patient burden, it is necessary to adjust the treatment paradigm accordingly. Treatment success is no longer defined solely by the control of disease activity; treatment success requires holistic improvement determined through the assessment of all aspects of the disease, ranging from disease control to comorbidity risk through to the assessment of health-related quality of life. This review explores the burden of AAV itself as well as treatment-related side effects with a special focus on the tools available to measure outcomes. The management of AAV has entered a new era with a strong focus on both the management and prevention of comorbidities as well as patient-reported outcomes, both of which are now considered key factors in defining treatment success.
摘要：
与健康相关的生活质量是整体福祉的关键因素，在ANCA相关性血管炎(AAV)的治疗选择中,这一点正成为一个日益突出的因素.AAV的可用治疗策略的进展导致了这种具有潜在致命短期结果的历史急性疾病。成为一种复发缓解的慢性疾病。这种对AAV的新观点意味着患者的生存不应再被视为唯一的主要治疗目标。为了考虑成功的治疗方法，在这种情况下应该描绘的其他结果包括患者的生活质量，以及治疗引起的发病率负担。AAV患者的合并症和生活质量受损，和许多其他自身免疫性疾病一样，可能是疾病本身的结果以及所采用的治疗的结果。AAV疾病过程可能导致器官损伤，包括肾衰竭和结构性肺损伤，增加患心血管疾病的风险.最重要的是，用于控制该疾病的治疗方法可能进一步增加总体合并症负担。此外，预先存在的合并症可增加AAV的严重程度,也可能是限制潜在治疗选择的禁忌症.生活质量是另一个中心话题，可以对患者的健康以及对治疗的依从性产生巨大影响。因此，持续监测合并症风险和生活质量是成功进行AAV管理的关键。这个过程,然而,可能很复杂；确定要关注的正确参数并不总是简单的，更重要的是,在医生看来，有时这些症状对患者的生活质量是最不利的。随着治疗能力的转变和对患者负担的理解，有必要相应地调整治疗模式。治疗成功不再仅仅由疾病活动的控制来定义;治疗成功需要通过对疾病各个方面的评估来确定的整体改善。从疾病控制到合并症风险，再到与健康相关的生活质量评估。这篇综述探讨了AAV本身的负担以及与治疗相关的副作用，特别关注可用于衡量结果的工具。AAV的管理已经进入了一个新时代，重点关注合并症的管理和预防以及患者报告的结果。这两者现在被认为是确定治疗成功的关键因素.
