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一项患者报告量表研究,用于评估 IgA 肾病患者的症状负担。

A patient report scale research to access the symptom burden in patients with IgA nephropathy.

机构信息

Graduate School of Clinical Medicine, Jinzhou Medical University, Jinzhou, Liaoning, China.

Urology and Nephrology Center, Department of Nephrology, Zhejiang Provincial People's Hospital, Affiliated People's Hospital, Hangzhou Medical College, Hangzhou, Zhejiang, China.

出版信息

Sci Rep. 2024 Sep 27;14(1):22104. doi: 10.1038/s41598-024-59586-3.

Abstract

Patients diagnosed with IgA nephropathy (IgAN) commonly experience a substantial burden of symptoms encompassing both physical and psychological aspects. Presently, there's a dearth of standardized assessment tools to effectively gauge the extent of symptom burden in IgAN patients. Therefore, this study aims to devise an IgAN Symptom Assessment Tool that enables a comprehensive evaluation of patient symptom burden and their self-perceived severity. Employing a prospective observational design, this study conducted a survey among patients diagnosed with IgAN at a hospital in China. The research team formulated an IgAN Symptom Burden Assessment Scale and administered a questionnaire to gauge patient symptom burden. Severity assessment was conducted on a 5-point Likert scale, with higher scores indicating a more pronounced burden of symptoms. The finalized scale comprised 14 distinct symptom items, and the questionnaire survey garnered responses from 200 patients, achieving a 100% response rate. Statistical analysis unveiled that nearly all patients regarded these symptoms as prevalent and significantly impactful on their daily lives, resulting in a considerable burden. Notably, mild oliguria, moderate nasal congestion, bitter taste , throat discomfort, alongside severe manifestations such as muscle weakness, fatigue, and foamy urine, were frequently reported by patients. The findings underscore that a substantial proportion of IgAN patients grapple with a significant burden of symptoms, emphasizing the imperative for healthcare providers to prioritize symptom management and implement proactive measures to alleviate these challenges. This study presents an innovative tool tailored for evaluating symptom burden specifically in IgAN patients. Subsequent research should center on validating this tool within larger patient cohorts to optimize the efficacy of symptom management in this demographic.

摘要

患有 IgA 肾病(IgAN)的患者通常会经历大量的症状负担,包括身体和心理方面。目前,缺乏标准化的评估工具来有效衡量 IgAN 患者的症状负担程度。因此,本研究旨在设计一种 IgAN 症状评估工具,能够全面评估患者的症状负担及其自我感知的严重程度。本研究采用前瞻性观察设计,在中国的一家医院对 IgAN 患者进行了调查。研究小组制定了 IgAN 症状负担评估量表,并通过问卷评估患者的症状负担。严重程度评估采用 5 级 Likert 量表,得分越高表示症状负担越重。最终的量表包括 14 个不同的症状项目,问卷调查共收到 200 名患者的回复,达到了 100%的回复率。统计分析表明,几乎所有患者都认为这些症状普遍存在,对他们的日常生活有显著影响,导致了相当大的负担。值得注意的是,轻度少尿、中度鼻塞、口苦、喉咙不适,以及严重的肌肉无力、疲劳和泡沫尿等症状,患者经常报告。这些发现强调了相当一部分 IgAN 患者承受着相当大的症状负担,这强调了医疗保健提供者优先管理症状并采取积极措施缓解这些挑战的重要性。本研究提出了一种专门用于评估 IgAN 患者症状负担的创新工具。未来的研究应集中在更大的患者群体中验证该工具,以优化该人群症状管理的效果。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7a1d/11437089/8f5b85b7f4d1/41598_2024_59586_Fig1_HTML.jpg

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