Banschbach Katelyn M, Singleton Jade, Wang Xing, Vora Sheetal S, Harris Julia G, Lytch Ashley, Pan Nancy, Klauss Julia, Fair Danielle, Hammelev Erin, Gilbert Mileka, Kreese Connor, Machado Ashley, Tarczy-Hornoch Peter, Morgan Esi M
Division of Pediatric Rheumatology, Seattle Children's Hospital, Seattle, WA, United States.
Department of Pediatrics, University of Washington, Seattle, WA, United States.
Front Pediatr. 2024 Jul 24;12:1430981. doi: 10.3389/fped.2024.1430981. eCollection 2024.
Ensuring high-quality race and ethnicity data within the electronic health record (EHR) and across linked systems, such as patient registries, is necessary to achieving the goal of inclusion of racial and ethnic minorities in scientific research and detecting disparities associated with race and ethnicity. The project goal was to improve race and ethnicity data completion within the Pediatric Rheumatology Care Outcomes Improvement Network and assess impact of improved data completion on conclusions drawn from the registry.
This is a mixed-methods quality improvement study that consisted of five parts, as follows: (1) Identifying baseline missing race and ethnicity data, (2) Surveying current collection and entry, (3) Completing data through audit and feedback cycles, (4) Assessing the impact on outcome measures, and (5) Conducting participant interviews and thematic analysis.
Across six participating centers, 29% of the patients were missing data on race and 31% were missing data on ethnicity. Of patients missing data, most patients were missing both race and ethnicity. Rates of missingness varied by data entry method (electronic vs. manual). Recovered data had a higher percentage of patients with Other race or Hispanic/Latino ethnicity compared with patients with non-missing race and ethnicity data at baseline. Black patients had a significantly higher odds ratio of having a clinical juvenile arthritis disease activity score (cJADAS10) of ≥5 at first follow-up compared with White patients. There was no significant change in odds ratio of cJADAS10 ≥5 for race and ethnicity after data completion. Patients missing race and ethnicity were more likely to be missing cJADAS values, which may affect the ability to detect changes in odds ratio of cJADAS ≥5 after completion.
About one-third of the patients in a pediatric rheumatology registry were missing race and ethnicity data. After three audit and feedback cycles, centers decreased missing data by 94%, primarily via data recovery from the EHR. In this sample, completion of missing data did not change the findings related to differential outcomes by race. Recovered data were not uniformly distributed compared with those with non-missing race and ethnicity data at baseline, suggesting that differences in outcomes after completing race and ethnicity data may be seen with larger sample sizes.
在电子健康记录（EHR）以及跨链接系统（如患者登记处）中确保高质量的种族和族裔数据，对于实现将种族和族裔少数群体纳入科学研究并检测与种族和族裔相关的差异这一目标而言是必要的。该项目的目标是改善儿科风湿病护理结局改善网络中的种族和族裔数据完整性，并评估数据完整性改善对登记处得出的结论的影响。
这是一项混合方法的质量改进研究，包括以下五个部分：（1）识别种族和族裔数据缺失的基线情况，（2）调查当前的数据收集和录入情况，（3）通过审核和反馈循环完成数据，（4）评估对结局指标的影响，（5）进行参与者访谈和主题分析。
在六个参与中心中，29%的患者缺少种族数据，31%的患者缺少族裔数据。在缺少数据的患者中，大多数患者同时缺少种族和族裔数据。缺失率因数据录入方法（电子录入与手工录入）而异。与基线时种族和族裔数据无缺失的患者相比，恢复数据中的患者中“其他种族”或“西班牙裔/拉丁裔族裔”的比例更高。与白人患者相比，黑人患者在首次随访时临床青少年关节炎疾病活动评分（cJADAS10）≥5的优势比显著更高。数据补全后，cJADAS10≥5的种族和族裔优势比无显著变化。缺少种族和族裔数据的患者更有可能缺少cJADAS值，这可能会影响检测补全后cJADAS≥5的优势比变化的能力。
儿科风湿病登记处中约三分之一的患者缺少种族和族裔数据。经过三个审核和反馈循环后，各中心将缺失数据减少了94%，主要是通过从电子健康记录中恢复数据。在这个样本中，缺失数据的补全并未改变与种族差异结局相关的研究结果。与基线时种族和族裔数据无缺失的数据相比，恢复的数据分布并不均匀，这表明在样本量更大的情况下，补全种族和族裔数据后的结局差异可能会显现出来。
