• 文献检索
  • 文档翻译
  • 深度研究
  • 学术资讯
  • Suppr Zotero 插件Zotero 插件
  • 邀请有礼
  • 套餐&价格
  • 历史记录
应用&插件
Suppr Zotero 插件Zotero 插件浏览器插件Mac 客户端Windows 客户端微信小程序
定价
高级版会员购买积分包购买API积分包
服务
文献检索文档翻译深度研究API 文档MCP 服务
关于我们
关于 Suppr公司介绍联系我们用户协议隐私条款
关注我们

Suppr 超能文献

核心技术专利:CN118964589B侵权必究
粤ICP备2023148730 号-1Suppr @ 2026

文献检索

告别复杂PubMed语法,用中文像聊天一样搜索,搜遍4000万医学文献。AI智能推荐,让科研检索更轻松。

立即免费搜索

文件翻译

保留排版,准确专业,支持PDF/Word/PPT等文件格式,支持 12+语言互译。

免费翻译文档

深度研究

AI帮你快速写综述,25分钟生成高质量综述,智能提取关键信息,辅助科研写作。

立即免费体验

儿童期起病的系统性红斑狼疮青少年中数据缺失的健康公平影响:儿童关节炎和风湿病研究联盟注册研究的概念验证研究。

Health Equity Implications of Missing Data Among Youths With Childhood-Onset Systemic Lupus Erythematosus: A Proof-of-Concept Study in the Childhood Arthritis and Rheumatology Research Alliance Registry.

机构信息

National Institute of Environmental Health Sciences, Research Triangle Park, North Carolina.

National Institute of Arthritis and Musculoskeletal and Skin Diseases, Bethesda, Maryland.

出版信息

Arthritis Care Res (Hoboken). 2023 Nov;75(11):2285-2294. doi: 10.1002/acr.25136. Epub 2023 May 30.

DOI:10.1002/acr.25136
PMID:37093036
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10593908/
Abstract

OBJECTIVE

Health disparities in childhood-onset systemic lupus erythematosus (SLE) disproportionately impact marginalized populations. Socioeconomically patterned missing data can magnify existing health inequities by supporting inferences that may misrepresent populations of interest. Our objective was to assess missing data and subsequent health equity implications among participants with childhood-onset SLE enrolled in a large pediatric rheumatology registry.

METHODS

We evaluated co-missingness of 12 variables representing demographics, socioeconomic position, and clinical factors (e.g., disease-related indices) using Childhood Arthritis and Rheumatology Research Alliance Registry childhood-onset SLE enrollment data (2015-2022; n = 766). We performed logistic regression to calculate odds ratios (ORs) and 95% confidence intervals (95% CIs) for missing disease-related indices at enrollment (Systemic Lupus Erythematosus Disease Activity Index 2000 [SLEDAI-2K] and/or Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index [SDI]) associated with data missingness. We used linear regression to assess the association between socioeconomic factors and SLEDAI-2K at enrollment using 3 analytic methods for missing data: complete case analysis, multiple imputation, and nonprobabilistic bias analyses, with missing values imputed to represent extreme low or high disadvantage.

RESULTS

On average, participants were missing 6.2% of data, with over 50% of participants missing at least 1 variable. Missing data correlated most closely with variables within data categories (i.e., demographic). Government-assisted health insurance was associated with missing SLEDAI-2K and/or SDI scores compared to private health insurance (OR 2.04 [95% CI 1.22, 3.41]). The different analytic approaches resulted in varying analytic sample sizes and fundamentally conflicting estimated associations.

CONCLUSION

Our results support intentional evaluation of missing data to inform effect estimate interpretation and critical assessment of causal statements that might otherwise misrepresent health inequities.

摘要

目的

儿童发病系统性红斑狼疮(SLE)中的健康差异不成比例地影响到边缘化人群。社会经济模式化的缺失数据可能会通过支持可能对目标人群产生误解的推断,从而加剧现有的健康不平等现象。我们的目的是评估在参加大型儿科风湿病学注册中心的儿童发病 SLE 患者中缺失数据及其对后续健康公平性的影响。

方法

我们使用儿童关节炎和风湿病研究联盟注册中心的儿童发病 SLE 登记数据(2015-2022 年;n=766)评估了 12 个变量的共缺失情况,这些变量代表人口统计学、社会经济地位和临床因素(例如疾病相关指标)。我们进行逻辑回归,以计算在登记时缺失疾病相关指标(SLE 疾病活动指数 2000[SLEDAI-2K]和/或系统性红斑狼疮国际合作临床/美国风湿病学会损害指数 [SDI])的几率比(OR)和 95%置信区间(95%CI),这些缺失与数据缺失有关。我们使用线性回归,使用缺失数据的 3 种分析方法(完全案例分析、多重插补和非概率偏差分析),来评估社会经济因素与登记时 SLEDAI-2K 的关系,其中缺失值被用来代表极端的低或高劣势。

结果

平均而言,参与者缺失了 6.2%的数据,超过 50%的参与者缺失了至少 1 个变量。缺失数据与数据类别内的变量最密切相关(即人口统计学)。与私人医疗保险相比,政府资助的医疗保险与 SLEDAI-2K 和/或 SDI 评分的缺失相关(OR 2.04[95%CI 1.22,3.41])。不同的分析方法导致分析样本量不同,并且对估计的关联产生了根本冲突的估计。

结论

我们的结果支持对缺失数据进行有针对性的评估,以告知效应估计解释,并对可能对健康不平等现象产生误解的因果陈述进行严格评估。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7065/10593908/be398557d7e3/nihms-1902262-f0001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7065/10593908/be398557d7e3/nihms-1902262-f0001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7065/10593908/be398557d7e3/nihms-1902262-f0001.jpg

相似文献

1
Health Equity Implications of Missing Data Among Youths With Childhood-Onset Systemic Lupus Erythematosus: A Proof-of-Concept Study in the Childhood Arthritis and Rheumatology Research Alliance Registry.儿童期起病的系统性红斑狼疮青少年中数据缺失的健康公平影响:儿童关节炎和风湿病研究联盟注册研究的概念验证研究。
Arthritis Care Res (Hoboken). 2023 Nov;75(11):2285-2294. doi: 10.1002/acr.25136. Epub 2023 May 30.
2
Correlation between the Modified Systemic Lupus Erythematosus Disease Activity Index 2000 and the European Consensus Lupus Activity Measurement in juvenile systemic lupus erythematosus.改良的系统性红斑狼疮疾病活动指数2000与欧洲青少年系统性红斑狼疮活动度测量共识之间的相关性
Lupus. 2016 Nov;25(13):1479-1484. doi: 10.1177/0961203316651737. Epub 2016 Jul 11.
3
Long-Term Clinical Outcomes in a Cohort of Adults With Childhood-Onset Systemic Lupus Erythematosus.儿童起病系统性红斑狼疮成人队列的长期临床结局。
Arthritis Rheumatol. 2019 Feb;71(2):290-301. doi: 10.1002/art.40697.
4
Relationship of regional ultraviolet index data with rash and systemic disease activity in youth with childhood-onset systemic lupus: results from the Childhood Arthritis and Rheumatology Research Alliance Registry.儿童期起病的系统性红斑狼疮患儿区域性紫外线指数数据与皮疹和全身疾病活动的关系:来自儿童关节炎和风湿病研究联盟注册处的结果。
Pediatr Rheumatol Online J. 2024 May 15;22(1):54. doi: 10.1186/s12969-024-00973-5.
5
Self-Reported Physical Activity Is Associated with Lupus Nephritis in Systemic Lupus Erythematosus: Data from KORean Lupus Network (KORNET) Registry.自我报告的身体活动与系统性红斑狼疮中的狼疮性肾炎相关:来自韩国狼疮网络(KORNET)注册研究的数据。
Yonsei Med J. 2018 Sep;59(7):857-864. doi: 10.3349/ymj.2018.59.7.857.
6
Late-onset systemic lupus erythematosus: characteristics and outcome in comparison to juvenile- and adult-onset patients-a multicenter retrospective cohort.迟发性系统性红斑狼疮:与青少年和成人发病患者相比的特征和结局-一项多中心回顾性队列研究。
Clin Rheumatol. 2020 Feb;39(2):435-442. doi: 10.1007/s10067-019-04776-y. Epub 2019 Nov 22.
7
Charlson Comorbidity Index Is Related to Organ Damage in Systemic Lupus Erythematosus: Data from KORean lupus Network (KORNET) Registry.查尔森合并症指数与系统性红斑狼疮的器官损伤相关:来自韩国狼疮网络(KORNET)注册研究的数据。
J Rheumatol. 2017 Apr;44(4):452-458. doi: 10.3899/jrheum.160900.
8
A Multicenter Study of Invasive Fungal Infections in Patients with Childhood-onset Systemic Lupus Erythematosus.一项关于儿童期起病的系统性红斑狼疮患者侵袭性真菌感染的多中心研究。
J Rheumatol. 2015 Dec;42(12):2296-303. doi: 10.3899/jrheum.150142.
9
Evolution of disease burden over five years in a multicenter inception systemic lupus erythematosus cohort.五年间多中心起始系统性红斑狼疮队列中疾病负担的演变。
Arthritis Care Res (Hoboken). 2012 Jan;64(1):132-7. doi: 10.1002/acr.20648.
10
Osteopontin and Disease Activity in Patients with Recent-onset Systemic Lupus Erythematosus: Results from the SLICC Inception Cohort.骨桥蛋白与近期发病系统性红斑狼疮患者疾病活动的相关性:来自 SLICC 发病队列研究的结果。
J Rheumatol. 2019 May;46(5):492-500. doi: 10.3899/jrheum.180713. Epub 2019 Jan 15.

引用本文的文献

1
Childhood-Onset Systemic Lupus Erythematosus (cSLE): An International Perspective.儿童发病系统性红斑狼疮(cSLE):国际视角。
Curr Allergy Asthma Rep. 2024 Oct;24(10):559-569. doi: 10.1007/s11882-024-01169-3. Epub 2024 Aug 15.

本文引用的文献

1
Analysing and reporting of observational data: a systematic review informing the EULAR points to consider when analysing and reporting comparative effectiveness research with observational data in rheumatology.分析和报告观察性数据:系统综述为 EULAR 提供信息,以分析和报告风湿病学中使用观察性数据的比较有效性研究时需要考虑的问题。
RMD Open. 2021 Nov;7(3). doi: 10.1136/rmdopen-2021-001818.
2
Measuring Structural Racism: A Guide for Epidemiologists and Other Health Researchers.测量结构性种族主义:流行病学学家和其他健康研究人员指南。
Am J Epidemiol. 2022 Mar 24;191(4):539-547. doi: 10.1093/aje/kwab239.
3
Community poverty level influences time to first pediatric rheumatology appointment in Polyarticular Juvenile Idiopathic Arthritis.
社区贫困程度影响多发性关节型幼年特发性关节炎患儿首次儿科风湿病就诊时间。
Pediatr Rheumatol Online J. 2021 Aug 14;19(1):122. doi: 10.1186/s12969-021-00610-5.
4
Handling missing data in a rheumatoid arthritis registry using random forest approach.采用随机森林方法处理类风湿关节炎注册研究中的缺失数据。
Int J Rheum Dis. 2021 Oct;24(10):1282-1293. doi: 10.1111/1756-185X.14203. Epub 2021 Aug 12.
5
Principles of pediatric lupus nephritis in a prospective contemporary multi-center cohort.前瞻性当代多中心队列研究中的儿童狼疮肾炎原则。
Lupus. 2021 Sep;30(10):1660-1670. doi: 10.1177/09612033211028658. Epub 2021 Jul 4.
6
Optimizing the Start Time of Biologics in Polyarticular Juvenile Idiopathic Arthritis: A Comparative Effectiveness Study of Childhood Arthritis and Rheumatology Research Alliance Consensus Treatment Plans.优化多关节幼年特发性关节炎生物制剂的起始时间:儿童关节炎和风湿病研究联盟共识治疗计划的比较有效性研究。
Arthritis Rheumatol. 2021 Oct;73(10):1898-1909. doi: 10.1002/art.41888. Epub 2021 Sep 3.
7
Improved Disease Course Associated With Early Initiation of Biologics in Polyarticular Juvenile Idiopathic Arthritis: Trajectory Analysis of a Childhood Arthritis and Rheumatology Research Alliance Consensus Treatment Plans Study.早期使用生物制剂治疗对幼年特发性关节炎多关节型患者病情改善相关:儿童关节炎和风湿病研究联盟共识治疗方案研究的轨迹分析。
Arthritis Rheumatol. 2021 Oct;73(10):1910-1920. doi: 10.1002/art.41892. Epub 2021 Aug 27.
8
Clinical research associates experience with missing patient reported outcomes data in cancer randomized controlled trials.临床研究协调员在癌症随机对照试验中遇到的缺失患者报告结局数据的情况。
Cancer Med. 2021 May;10(9):3026-3034. doi: 10.1002/cam4.3826. Epub 2021 Apr 9.
9
Approaches to addressing missing values, measurement error, and confounding in epidemiologic studies.处理流行病学研究中缺失值、测量误差和混杂的方法。
J Clin Epidemiol. 2021 Mar;131:89-100. doi: 10.1016/j.jclinepi.2020.11.006. Epub 2020 Nov 8.
10
Pilot Study of the Juvenile Dermatomyositis Consensus Treatment Plans: A CARRA Registry Study.青少年皮肌炎共识治疗方案的初步研究:一项CARRA注册研究
J Rheumatol. 2021 Jan 1;48(1):114-122. doi: 10.3899/jrheum.190494. Epub 2020 Apr 1.