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镰状细胞生殖健康选择:针对单基因疾病的随机孕前干预模型方案。

CHOICES for sickle cell reproductive health: A protocol of a randomized preconception intervention model for a single gene disorder.

机构信息

College of Nursing, University of Florida, Gainesville, Florida, United States of America.

College of Nursing, University of Tennessee Health Science Center, Memphis, Tennessee, United States of America.

出版信息

PLoS One. 2023 Dec 7;18(12):e0294907. doi: 10.1371/journal.pone.0294907. eCollection 2023.

Abstract

Our long-term goal is to foster genetically informed reproductive health knowledge and behaviors among young adults with sickle cell disease (SCD) or sickle cell trait (SCT) with a web-based, tailored, multimedia intervention called CHOICES. CHOICES is designed to help young adults with SCD or SCT preconception to gain knowledge of genetic inheritance, specify their reproductive health intentions (their parenting plan), and engage in reproductive health behaviors concordant with their parenting plan. In a previous study, we found high acceptability of both the e-Book (usual care control) and CHOICES interventions. We also found sustained (24 months), significant effects on knowledge but not on behavior, most likely because half of the recruited group was not at risk for their children inheriting SCD. Hence, we propose an adequately powered randomized controlled trial with the CHOICES intervention and an e-Book control to compare their effects on genetic inheritance knowledge and at-risk reproductive health behaviors (immediate posttest and at 6, 12, 18, and 24 months). We will conduct subgroup analyses to provide insight into the baseline knowledge and behavior as well as the intervention effects in different demographic or acceptability groups. Given the scalability and low cost of CHOICES, if proved to be effective, it can reach the affected population at low cost.

摘要

我们的长期目标是通过基于网络的、定制的多媒体干预措施——称为 CHOICES,培养患有镰状细胞病(SCD)或镰状细胞特征(SCT)的年轻人具有遗传知情的生殖健康知识和行为。CHOICES 旨在帮助 SCD 或 SCT 成年前的年轻人了解遗传遗传知识,明确他们的生殖健康意向(他们的育儿计划),并参与符合其育儿计划的生殖健康行为。在之前的一项研究中,我们发现电子书(常规护理对照)和 CHOICES 干预措施都具有很高的可接受性。我们还发现知识的持续(24 个月)、显著影响,但行为没有影响,最有可能的原因是招募的一半群体的孩子不会遗传 SCD。因此,我们提出了一项充分有力的随机对照试验,使用 CHOICES 干预措施和电子书对照来比较它们对遗传遗传知识和高危生殖健康行为的影响(即时后测和 6、12、18 和 24 个月)。我们将进行亚组分析,以深入了解不同人口统计学或可接受性群体的基线知识和行为以及干预效果。鉴于 CHOICES 的可扩展性和低成本,如果被证明有效,它可以以低成本覆盖受影响的人群。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7490/10703323/ede897f31366/pone.0294907.g001.jpg

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