Wunderlich Whitney, Schulte Anna, Schleiss Mark R, Vacquier Marc, Sidebottom Abbey
Allina Health, 800 E 28th Street, Minneapolis, MN, 55407, USA.
Department of Pediatrics, Division of Pediatric Infectious Diseases, University of Minnesota, 2001 6th Street SE, Minneapolis, MN, 55455, USA.
J Racial Ethn Health Disparities. 2024 Aug 13. doi: 10.1007/s40615-024-02123-9.
The objective of this study is to evaluate if racial and other demographic disparities exist between patients who enrolled or declined participation in a congenital cytomegalovirus (cCMV) newborn universal screening research study.
We examined characteristics for patients approached over a 2-year period to participate in a cCMV newborn screening study. Maternal characteristics included age, race, ethnicity, preferred language, interpreter need, insurance type, and number of living children. Recruitment period was also examined (pre-pandemic January 1 to December 31, 2019, and during COVID-19 July 1, 2021 to June 30, 2022). Characteristics were compared for patients who enrolled in the study and those who declined participation using descriptive statistics and logistic regression.
Of the study sample (n = 4156), 3148 (75.7%) patients enrolled and 1008 (24.3%) declined. Declined participation rates were 47.2% among non-Hispanic (NH) Black patients and 15.7% among NH White patients. In the final adjusted model, NH Black patients (OR 3.14, 95% CI 2.53-3.90), those with public insurance (OR 1.81, 95% CI 1.48-2.22), and those with four or more children (OR for 4 + children 1.45, 95% CI 1.11-1.90) were the most likely to decline research participation.
NH Black and NH multiracial patients were among the most likely patient groups to decline study participation. These groups have previously been identified to be at increased risk for cCMV. This differential participation in cCMV research could result in underreported estimates of prevalence. Future cCMV research, including surveillance studies, should include documentation of differential participation to both address efforts to improve research participation and document and address potential bias in results.
本研究的目的是评估参与或拒绝参与先天性巨细胞病毒（cCMV）新生儿普遍筛查研究的患者之间是否存在种族及其他人口统计学差异。
我们研究了在两年时间内被邀请参与cCMV新生儿筛查研究的患者的特征。母亲的特征包括年龄、种族、民族、首选语言、是否需要翻译、保险类型以及在世子女数量。还对招募期进行了研究（大流行前的2019年1月1日至12月31日，以及2021年7月1日至2022年6月30日的新冠疫情期间）。使用描述性统计和逻辑回归对参与研究的患者和拒绝参与的患者的特征进行了比较。
在研究样本（n = 4156）中，3148名（75.7%）患者参与了研究，1008名（24.3%）拒绝参与。非西班牙裔（NH）黑人患者的拒绝参与率为47.2%，NH白人患者为15.7%。在最终调整模型中，NH黑人患者（比值比[OR] 3.14，95%置信区间[CI] 2.53 - 3.90）、有公共保险的患者（OR 1.81，95% CI 1.48 - 2.22）以及有四个或更多孩子的患者（4个及以上孩子的OR 1.45，95% CI 1.11 - 1.90）最有可能拒绝参与研究。
NH黑人和NH多种族患者是最有可能拒绝参与研究的患者群体之一。这些群体此前已被确定感染cCMV的风险较高。这种在cCMV研究中的差异参与可能导致患病率估计报告不足。未来的cCMV研究，包括监测研究，应包括对差异参与情况的记录，以既解决提高研究参与度的努力，又记录并解决结果中潜在的偏差。
