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

CHOICES for sickle cell reproductive health: A protocol of a randomized preconception intervention model for a single gene disorder.
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DOI:
10.1371/journal.pone.0294907
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发表时间:
2023
期刊:
影响因子:
3.7
通讯作者:
--
中科院分区:
综合性期刊3区
文献类型:
--
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我们的长期目标是通过名为 CHOICES 的基于网络的定制多媒体干预措施,在患有镰状细胞病 (SCD) 或镰状细胞性状 (SCT) 的年轻人中培养遗传性生殖健康知识和行为。 CHOICES 旨在帮助有 SCD 或 SCT 先孕的年轻人获得遗传知识,明确他们的生殖健康意图(他们的养育计划),并进行与其养育计划相一致的生殖健康行为。在之前的一项研究中,我们发现电子书(常规护理控制)和 CHOICES 干预措施的可接受性很高。我们还发现对知识有持续(24 个月)的显着影响,但对行为没有影响,很可能是因为一半的招募群体的孩子没有遗传 SCD 的风险。因此,我们建议开展一项充分有力的随机对照试验,其中包括 CHOICES 干预措施和电子书对照,以比较它们对遗传知识和高危生殖健康行为(即后测试以及 6、12、18 和 24 个月)的影响。我们将进行亚组分析,以深入了解不同人口或可接受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,如果被证明是有效的,它可以以低成本到达受影响的人群。
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.
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