让代表人数不足的青少年及其家庭参与临床研究的公平招募策略:BEAD-T1D 试点研究的结果。

IF 2.6 3区 医学 Q3 ENDOCRINOLOGY & METABOLISM
Ricardo Medina Peñaranda, Lauren E Figg, Sarah J Hanes, Gary M Shaw, Lisa J Chamberlain, Jennifer Raymond, Diana Naranjo, David M Maahs, Korey K Hood, Ananta Addala
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引用次数: 0

摘要

简介:为了解决临床研究中的不均衡问题,我们介绍了在 "建立证据,消除 1 型糖尿病的不均衡"(BEAD-T1D)研究中优化招募代表性不足家庭的策略:为了解决临床研究中的差异问题,我们介绍了如何优化招募代表性不足的家庭参与 "建立证据以解决 1 型糖尿病差异"(BEAD-T1D)研究的策略:方法:我们聘请了一名双语/双文化拉丁裔研究助理(RA),以促进与文化相一致的儿科 1 型糖尿病家庭招募工作。研究助理使用家庭偏好的语言、联系时间对家庭进行筛选、接触和同意,并回答他们对研究的个人顾虑。家庭可选择在门诊就诊期间(亲自就诊,或通过视频/电话进行虚拟就诊)表示同意,由家长/监护人设定步调以确保理解:64 个家庭(西班牙裔-65%,非西班牙裔白人 [NHW] - 17%,非西班牙裔黑人 [NHB] - 1%,其他-4%)符合条件。在接触的 49 人中,32 人同意(397.9 岁;女性-81%;西班牙裔-72%;非西班牙裔白人-28%;收入 5 万以上-69%;讲西班牙语-50%)。门诊方式对成功获得同意非常重要:87%的门诊咨询获得了同意。针对 RA 的门诊方法的障碍包括:临床医生迟迟不回复/没有回复、护理团队结束访问以及带宽/连接问题。门诊方法的促进因素包括门诊护理团队的合作、灵活的 RA 时间以及提前数天进行患者筛查。我们超额完成了调查(31/30)、焦点小组/访谈(26/20)和咨询委员会(22/10)的招募目标:我们发现,符合文化和语言习惯的工作人员、灵活的招募方法以及优先考虑参与者的可用性是招募多样化研究群体的解决方案,从而超额完成了招募目标。与家庭建立的文化人际关系解决了医疗系统内外的研究参与障碍。这些策略表明,在糖尿病研究中,公平的临床试验招募是可行的。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Strategies for Equitable Recruitment to Engage Underrepresented Youth and Their Families into Clinical Research: Findings from the BEAD-T1D Pilot Study.

Introduction: To address disparities in clinical research, we present strategies to optimize recruitment of underrepresented families into the Building the Evidence to Address Disparities in Type 1 Diabetes (BEAD-T1D) study.

Methods: A bilingual/bicultural Latino research assistant (RA) was hired to facilitate culturally congruent recruitment for pediatric type 1 diabetes families. The RA screened, approached, and consented families using their preferred language, time of contact, and answered personal concerns around research. Families were given the option to consent during outpatient clinic visits (in-person, or virtually via video/phone call) at a pace set by the parent/guardian to ensure understanding.

Results: Sixty-four families (Hispanic-65%, Non-Hispanic White [NHW]-17%, Non-Hispanic Black-1%, and Other-4%) were eligible. Of 49 approached, 32 consented (39 ± 7.9 years; female-81%; Hispanic-72%, NHW-28%, <50K income-69%, Spanish-speaking-50%). Clinic approaches were important to successful consent: 87% of the clinic approaches resulted in consent. Barriers to clinic approaches for RA included late/no response from clinicians, care team ending visit, and bandwidth/connectivity issues. Facilitators to clinic approaches included collaborative clinic care teams, flexible RA hours, and patient screening days in advance. We exceeded our recruitment goals for surveys (31/30), focus groups/interviews (26/20), and advisory board (22/10).

Conclusions: We identified that culturally and linguistically congruent staff, flexible recruitment practices, and prioritizing participant availability were solutions to recruit a diverse study cohort resulting exceeding recruitment goals. Cultural interpersonal relationships formed with families addressed barriers to research participation within and outside of the medical system. These strategies suggest equitable clinical trial recruitment is feasible in diabetes research.

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来源期刊
Hormone Research in Paediatrics
Hormone Research in Paediatrics ENDOCRINOLOGY & METABOLISM-PEDIATRICS
CiteScore
4.90
自引率
6.20%
发文量
88
审稿时长
4-8 weeks
期刊介绍: The mission of ''Hormone Research in Paediatrics'' is to improve the care of children with endocrine disorders by promoting basic and clinical knowledge. The journal facilitates the dissemination of information through original papers, mini reviews, clinical guidelines and papers on novel insights from clinical practice. Periodic editorials from outstanding paediatric endocrinologists address the main published novelties by critically reviewing the major strengths and weaknesses of the studies.
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