Sydney C W Tang, Chen Wei, Carolina Aldworth, Aneesh T George, Julia Kattlun, Gisela R Tomas, Michel Kroes, Dario Roccatello, Raymond Przybysz, Serge Smeets, Keisha Golden, Jade Garratt-Wheeldon, Emma Chatterton, Jonathan de Courcy, Richard Lafayette
{"title":"成人 IgAN 患者的临床和人文负担:全球真实世界调查","authors":"Sydney C W Tang, Chen Wei, Carolina Aldworth, Aneesh T George, Julia Kattlun, Gisela R Tomas, Michel Kroes, Dario Roccatello, Raymond Przybysz, Serge Smeets, Keisha Golden, Jade Garratt-Wheeldon, Emma Chatterton, Jonathan de Courcy, Richard Lafayette","doi":"10.34067/KID.0000000613","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Immunoglobulin A nephropathy (IgAN) is a chronic, progressive kidney disease in which proteinuria, reduced estimated glomerular filtration rate (eGFR), pain and fatigue are common. How symptoms interact and impact patient quality of life (QoL) in real-world practice is poorly studied. This study investigated how patient and physician symptom perceptions differ and how proteinuria and eGFR correlate with pain, fatigue, and QoL in adult IgAN patients.</p><p><strong>Methods: </strong>Data were drawn from the Adelphi IgAN Disease Specific Programme™, a cross-sectional survey of physicians and their biopsy confirmed IgAN patients in China, France, Germany, Italy, Spain, the United Kingdom, United States, and Japan, from June-October 2021. Physicians provided demographics and clinical characteristics, including pain and fatigue severity. The same patients completed a self-completion form containing questions on symptom severity, the EQ-5D-5L, Kidney Disease Quality of Life, and Work Productivity and Activity Impairment questionnaires. Symptom scores were grouped by severity and patients grouped by proteinuria and eGFR. Analysis of variance, chi-squared or Fisher's exact tests were performed as appropriate and Dunn's multiple comparisons with Bonferroni adjustment for pair-wise comparisons.</p><p><strong>Results: </strong>Overall, 1515 patients were included (mean [standard deviation] age: 43 [15] years, 60% [n=903] male, 70% [n=1020/1459] diagnosed >1 year ago). Pain was reported by 46% (n=374) of physicians and 47% (n=384) of patients and fatigue by 65% (n=530) of physicians and 76% (n=620) of patients. Both pain and fatigue increased with increased proteinuria and reduced eGFR (all p<0.001). Finally, patients with increased proteinuria and reduced eGFR experienced worse (p<0.05) QoL and work productivity across all measures (except work absenteeism).</p><p><strong>Conclusions: </strong>Patients with higher proteinuria and lower eGFR face higher symptom burden and reduced QoL than their counterparts. Physicians underestimated fatigue levels faced by patients. In order to improve QoL, more effective treatments are needed to prevent high proteinuria and preserve eGFR.</p>","PeriodicalId":17882,"journal":{"name":"Kidney360","volume":null,"pages":null},"PeriodicalIF":3.2000,"publicationDate":"2024-10-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Clinical and Humanistic Burden of IgAN in Adult Patients: A Global Real-World Survey.\",\"authors\":\"Sydney C W Tang, Chen Wei, Carolina Aldworth, Aneesh T George, Julia Kattlun, Gisela R Tomas, Michel Kroes, Dario Roccatello, Raymond Przybysz, Serge Smeets, Keisha Golden, Jade Garratt-Wheeldon, Emma Chatterton, Jonathan de Courcy, Richard Lafayette\",\"doi\":\"10.34067/KID.0000000613\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>Immunoglobulin A nephropathy (IgAN) is a chronic, progressive kidney disease in which proteinuria, reduced estimated glomerular filtration rate (eGFR), pain and fatigue are common. How symptoms interact and impact patient quality of life (QoL) in real-world practice is poorly studied. This study investigated how patient and physician symptom perceptions differ and how proteinuria and eGFR correlate with pain, fatigue, and QoL in adult IgAN patients.</p><p><strong>Methods: </strong>Data were drawn from the Adelphi IgAN Disease Specific Programme™, a cross-sectional survey of physicians and their biopsy confirmed IgAN patients in China, France, Germany, Italy, Spain, the United Kingdom, United States, and Japan, from June-October 2021. Physicians provided demographics and clinical characteristics, including pain and fatigue severity. The same patients completed a self-completion form containing questions on symptom severity, the EQ-5D-5L, Kidney Disease Quality of Life, and Work Productivity and Activity Impairment questionnaires. Symptom scores were grouped by severity and patients grouped by proteinuria and eGFR. Analysis of variance, chi-squared or Fisher's exact tests were performed as appropriate and Dunn's multiple comparisons with Bonferroni adjustment for pair-wise comparisons.</p><p><strong>Results: </strong>Overall, 1515 patients were included (mean [standard deviation] age: 43 [15] years, 60% [n=903] male, 70% [n=1020/1459] diagnosed >1 year ago). Pain was reported by 46% (n=374) of physicians and 47% (n=384) of patients and fatigue by 65% (n=530) of physicians and 76% (n=620) of patients. Both pain and fatigue increased with increased proteinuria and reduced eGFR (all p<0.001). Finally, patients with increased proteinuria and reduced eGFR experienced worse (p<0.05) QoL and work productivity across all measures (except work absenteeism).</p><p><strong>Conclusions: </strong>Patients with higher proteinuria and lower eGFR face higher symptom burden and reduced QoL than their counterparts. Physicians underestimated fatigue levels faced by patients. In order to improve QoL, more effective treatments are needed to prevent high proteinuria and preserve eGFR.</p>\",\"PeriodicalId\":17882,\"journal\":{\"name\":\"Kidney360\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":3.2000,\"publicationDate\":\"2024-10-22\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Kidney360\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.34067/KID.0000000613\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"UROLOGY & NEPHROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Kidney360","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.34067/KID.0000000613","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"UROLOGY & NEPHROLOGY","Score":null,"Total":0}
引用次数: 0
摘要
背景:免疫球蛋白 A 肾病(IgAN)是一种慢性进行性肾病,常见的症状有蛋白尿、估计肾小球滤过率(eGFR)降低、疼痛和疲劳。在现实世界中,症状如何相互作用并影响患者的生活质量(QoL),这方面的研究很少。本研究调查了成年 IgAN 患者中患者和医生对症状的感知有何不同,以及蛋白尿和 eGFR 与疼痛、疲劳和 QoL 的相关性:数据来自阿德尔菲 IgAN 疾病专项计划™,这是一项横断面调查,调查对象为中国、法国、德国、意大利、西班牙、英国、美国和日本的医生及其活检确诊的 IgAN 患者,调查时间为 2021 年 6 月至 10 月。医生提供了人口统计学和临床特征,包括疼痛和疲劳的严重程度。同样的患者还填写了一份自我填写表格,其中包含症状严重程度、EQ-5D-5L、肾病生活质量以及工作效率和活动障碍问卷。症状评分按严重程度分组,患者按蛋白尿和 eGFR 分组。根据情况进行方差分析、卡方检验或费雪精确检验,配对比较采用邓恩多重比较法,并进行 Bonferroni 调整:共纳入 1515 名患者(平均[标准差]年龄:43[15]岁,60%[n=903]为男性,70%[n=1020/1459]一年前确诊)。46%(n=374)的医生和 47%(n=384)的患者报告了疼痛,65%(n=530)的医生和 76%(n=620)的患者报告了疲劳。疼痛和疲劳均随蛋白尿增加和 eGFR 降低而增加(所有 p 结论:与同类患者相比,蛋白尿增加和 eGFR 降低的患者面临的症状负担和 QoL 都更重。医生低估了患者面临的疲劳程度。为了改善 QoL,需要更有效的治疗方法来预防高蛋白尿和保护 eGFR。
Clinical and Humanistic Burden of IgAN in Adult Patients: A Global Real-World Survey.
Background: Immunoglobulin A nephropathy (IgAN) is a chronic, progressive kidney disease in which proteinuria, reduced estimated glomerular filtration rate (eGFR), pain and fatigue are common. How symptoms interact and impact patient quality of life (QoL) in real-world practice is poorly studied. This study investigated how patient and physician symptom perceptions differ and how proteinuria and eGFR correlate with pain, fatigue, and QoL in adult IgAN patients.
Methods: Data were drawn from the Adelphi IgAN Disease Specific Programme™, a cross-sectional survey of physicians and their biopsy confirmed IgAN patients in China, France, Germany, Italy, Spain, the United Kingdom, United States, and Japan, from June-October 2021. Physicians provided demographics and clinical characteristics, including pain and fatigue severity. The same patients completed a self-completion form containing questions on symptom severity, the EQ-5D-5L, Kidney Disease Quality of Life, and Work Productivity and Activity Impairment questionnaires. Symptom scores were grouped by severity and patients grouped by proteinuria and eGFR. Analysis of variance, chi-squared or Fisher's exact tests were performed as appropriate and Dunn's multiple comparisons with Bonferroni adjustment for pair-wise comparisons.
Results: Overall, 1515 patients were included (mean [standard deviation] age: 43 [15] years, 60% [n=903] male, 70% [n=1020/1459] diagnosed >1 year ago). Pain was reported by 46% (n=374) of physicians and 47% (n=384) of patients and fatigue by 65% (n=530) of physicians and 76% (n=620) of patients. Both pain and fatigue increased with increased proteinuria and reduced eGFR (all p<0.001). Finally, patients with increased proteinuria and reduced eGFR experienced worse (p<0.05) QoL and work productivity across all measures (except work absenteeism).
Conclusions: Patients with higher proteinuria and lower eGFR face higher symptom burden and reduced QoL than their counterparts. Physicians underestimated fatigue levels faced by patients. In order to improve QoL, more effective treatments are needed to prevent high proteinuria and preserve eGFR.