An evaluation of health-related quality of life in patients with systemic lupus erythematosus using PROMIS and Neuro-QoL
An evaluation of health-related quality of life in patients with systemic lupus erythematosus using PROMIS and Neuro-QoL
复制标题
DOI：
10.1007/s10067-016-3476-6
复制
发表时间：
2017-03-01
影响因子：
3.4
通讯作者：
Chen, Shih-Yin
中科院分区：
文献类型：
--
作者：
Lai, Jin-Shei;Beaumont, Jennifer L.;Chen, Shih-Yin
系统性红斑狼疮（SLE）是一种多器官慢性自身免疫性疾病，可影响患者健康相关生活质量（HRQOL）。本研究使用来自患者报告结果测量信息系统（PROMIS）和神经系统疾病生活质量（neuroqol）的问卷评估SLE患者的HRQOL。SLE患者完成了一项在线调查，包括promise -29健康概况、promise -心理社会疾病负面影响和neuroqol应用认知。在美国普通人群中，PROMIS和neuroqol评分的平均值为50。患者自评SLE疾病严重程度为可忽略、轻度、中度或重度。在333名参与者中（平均年龄45岁，92%为女性，26%为黑人，SLE疾病平均病程12年，56% SLE疾病严重程度为中度或重度），平均HRQOL评分比一般人群差0.5 SD，在疲劳、应用认知、社会心理疾病负面影响、疼痛干扰和身体功能领域观察到最大的缺陷。SLE疾病严重程度越大，平均HRQOL评分越差（均p < 0.05）。除社会角色满意度外，疼痛严重程度与各领域HRQOL评分均相关（p < 0.05）。所有PROMIS和neuroqol评分的重测信度均超过0.70。promise -29和neuroqol是评估SLE患者HRQOL的有效工具。这些患者报告了与SLE疾病严重程度相关的实质性缺陷，疼痛是一个重要的独立因素。应在SLE患者的常规临床护理中监测这些缺陷，并在研究新疗法时进行评估。
Systemic lupus erythematosus (SLE) is a multi-organ chronic autoimmune disease that can negatively affect patients' health-related quality of life (HRQOL). This study evaluated HRQOL of SLE patients using questionnaires from the Patient-Reported Outcomes Measurement Information System (PROMIS) and Quality of Life in Neurological Disorders (Neuro-QoL). Individuals with SLE completed an online survey consisting of the PROMIS-29 health profile, PROMIS Psychosocial Illness Impact-Negative, and Neuro-QoL Applied Cognition. PROMIS and Neuro-QoL scores have a mean of 50 in the US general population. Patients self-rated SLE disease severity as negligible, mild, moderate, or severe. Of the 333 participants (mean age 45 years; 92% female; 26% Black; mean SLE disease duration 12 years, 56% with SLE disease severity as moderate or severe), mean HRQOL scores were worse than those of the general population by ae0.5 SD with the greatest deficits observed in the domains of fatigue, applied cognition, psychosocial illness impact-negative, pain interference, and physical function. Greater SLE disease severity was associated with worse mean HRQOL scores (all p < 0.05). Pain severity was also associated with worse HRQOL scores on all domains (p < 0.05) except for satisfaction with social role. Test-retest reliability exceeded 0.70 for all PROMIS and Neuro-QoL scores. PROMIS-29 and Neuro-QoL are valid tools to assess HRQOL in patients with SLE. These patients reported substantial deficits that correlated with their SLE disease severity, with pain being an important independent contributor. These deficits should be monitored in SLE patients during their routine clinical care and evaluated when investigating new therapies.