Patient-reported outcome assessment in vasculitis may provide important data and a unique perspective.
Patient-reported outcome assessment in vasculitis may provide important data and a unique perspective.
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DOI：
10.1002/acr.20276
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发表时间：
2010-11
影响因子：
4.7
通讯作者：
Merkel PA
中科院分区：
文献类型：
--
作者：
Herlyn K;Hellmich B;Seo P;Merkel PA
评估患者对血管炎疾病负担的自我估计，并比较美国、德国和英国患者群体的数据。血管炎的结果评估主要侧重于医生对疾病活动和损害的评估。我们对患者对疾病负担的看法知之甚少。患者对一系列血管炎相关项目进行排名（0-5 级），以评估疼痛、日常功能干扰、不适和/或烦恼、焦虑/心理影响以及医疗重要性的组合。患者还被要求列出该疾病的 5 个最麻烦的方面。收集了来自 3 个国家 264 名血管炎患者的数据。韦格纳肉芽肿病是主要疾病，占该人群的 63%。 98% 的病例得到了医生的确诊。自由文本部分最常见的项目是疲劳（75%），其次是疼痛（31%）、肌肉骨骼症状（24%）、呼吸困难（19%）、财务问题（13%）、鼻涕/结痂（14%）和体重增加（10%）。各个项目的排名差异很大：疲劳（3.5）、精力丧失（3.4）、体重增加（3.1）、关节疼痛（3.0）和鼻窦炎（3.0）是至少 50% 的患者所经历的这些症状中排名最高的症状。几种严重的表现（例如透析、癫痫发作、氧气依赖）排名较低（<3.0）。疲劳和能量水平降低被认为是血管炎患者最重要的疾病负担；与器官损伤相关的表现的评级较低。患者对血管炎影响的看法与医生的评级不同。血管炎的未来结果评估应包括患者的观点。
To assess patients’ self-estimates of the burden of disease in vasculitis and to compare data across patient populations from the US, Germany, and the UK. Outcome assessment in vasculitis primarily focuses on physician evaluations of disease activity and damage. Little is known about the patients’ perspectives regarding the burden of disease. Patients ranked (scale 0–5) a list of vasculitis-related items to estimate a combination of pain, interference with daily function, discomfort and/or annoyance, anxiety/psychological impact, and medical importance. Patients were also asked to list the 5 most troublesome aspects of the disease. Data from 264 patients with vasculitis from 3 countries were collected. Wegener’s granulomatosis was the predominant disease, comprising 63% of the cohort. Diagnoses were confirmed by physicians in 98% of cases. The most common item from the free-text sections was fatigue (75%), followed by pain (31%), musculoskeletal symptoms (24%), difficulty breathing (19%), financial aspects (13%), nasal discharge/crusting (14%), and weight gain (10%). Rankings of individual items varied substantially: fatigue (3.5), loss of energy (3.4), weight gain (3.1), joint pain (3.0), and sinusitis (3.0) were the highest-ranked symptoms among those manifestations experienced by at least 50% of patients. Several severe manifestations (e.g., dialysis, seizures, oxygen dependency) were ranked lower (<3.0). Fatigue and reduced energy level are considered the most important disease burdens by patients with vasculitis; manifestations associated with organ damage were rated lower. The patients’ perspectives of the impact of vasculitis differ from the physicians’ ratings. Future outcome assessment in vasculitis should include the patients’ perspectives.
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影响因子：
27.4
作者：
Mukhtyar, C.;Lee, R.;Luqmani, R. A.
通讯作者：
Luqmani, R. A.
影响因子：
--
作者：
Exley, AR;Bacon, PA;Adu, D
通讯作者：
Adu, D
DOI：
10.1002/art.10341
发表时间：
2002-04-15
期刊：
ARTHRITIS & RHEUMATISM-ARTHRITIS CARE & RESEARCH
影响因子：
--
作者：
Boomsma, MM;Bijl, M;Tervaert, JWC
通讯作者：
Tervaert, JWC
DOI：
10.1002/art.11464
发表时间：
2003-12-15
期刊：
ARTHRITIS & RHEUMATISM-ARTHRITIS CARE & RESEARCH
影响因子：
--
作者：
Hellmann, DB;Uhlfelder, ML;Rubin, HR
通讯作者：
Rubin, HR
DOI：
10.3899/jrheum.090373
发表时间：
2009-10
期刊：
The Journal of rheumatology
影响因子：
--
作者：
Merkel PA;Herlyn K;Mahr AD;Neogi T;Seo P;Walsh M;Boers M;Luqmani R
通讯作者：
Luqmani R