Sickle Cell Reproductive CHOICES: Efficacy of a Primary Prevention Intervention

描述（由申请人提供）：我们的长期目标是促进患有镰状细胞病（SCD）或镰状细胞特征（SCT）的年轻人做出明智的生殖健康决定。不幸的是，对于许多患有SCD和SCT的年轻人来说，怀孕时没有机会做出充分知情的生殖健康决定，这与自己或伴侣的SCD/SCT状况或其遗传传播的知识不足或不正确有关。我们将通过选择或常规护理注意控制干预的两组设计来确定12、18和24个月对生殖知识和生殖健康行为的长期影响。在这个混合方法的应用中，我们将完成疗效试验，增加一个新的定性目标，以了解研究参与如何影响参与者的生殖行为，并与国家咨询委员会（NAB）一起，在4个州（CA， TX， NC， CT）计划和试点测试一项多站点基于网络的研究的可行性。具体目标是：目标1。在236名患有SCD或SCT的年轻人（18至35岁）中，比较常规护理和选择增强组（12个月）对生殖健康知识和生殖健康行为的持续影响（12、18和24个月）。在所有时间点，我们假设选择组的知识得分和与育儿计划一致的行为将比常规护理组更高。目标2。通过对60名参与者的访谈，探讨他们对参与研究的看法和经历，以及在研究期间影响他们生殖健康行为的因素。我们将确定控制组或选择组参与者在哪些条件下改变了或没有改变其生殖健康行为，这对于解释结果很重要，如果定性发现表明可以修改干预措施。目标3。在100名新招募的患有SCD或SCT的年轻人（18至35岁）中，确定将CHOICES试验复制为一个24个月的多站点、基于社区的研究的可行性，该研究采用互联网和基于网络的招募、交付和保留策略。招聘率和留任率以及NAB的咨询将指导设计关于选择性选择干预的多地点国家有效性研究的程序。

DESCRIPTION (provided by applicant): Our long-term goal is to foster informed reproductive health decisions by young adults with sickle cell disease (SCD) or sickle cell trait (SCT). Unfortunately for many young adults with SCD and SCT pregnancies occur without the opportunity to make well-informed reproductive health decisions, which is related to insufficient or incorrect knowledge of one's or the partner's SCD/SCT status or its genetic transmission. We will determine the long-term 12-, 18- and 24-mo effects on reproductive knowledge and reproductive health behaviors in a two-group design with CHOICES or usual care attention control [eBook] interventions. In this mixed-method application we will complete the efficacy trial, add a new qualitative aim at 24 mos to understand how study participation influenced participants' reproductive behaviors, and with a National Advisory Board (NAB), plan and pilot test the feasibility of a multi-site web-based study in 4 states (CA, TX, NC, CT). Specific aims are to: Aim 1. In 236 young adults (18 to 35 yr) with SCD or SCT, compare usual care and CHOICES boosted (at 12 mos) groups for sustained effects on reproductive health knowledge and reproductive health behaviors (at 12, 18, & 24 mo). At all time points, we hypothesize that knowledge scores and behaviors consistent with the parenting plan will be greater in the CHOICES group than the usual care group. Aim 2. From interviews with 60 of these participants, explore their views about and experience with the aim1 study participation and what influenced their reproductive health behaviors during the study. We will identify conditions under which participants did or did not change their reproductive health behaviors as participants in the control or CHOICES groups, which will be important for interpretation of outcomes and if indicated by qualitative findings to modify the intervention(s). Aim 3. In 100 newly recruited young adults (18 to 35 yr) with SCD or SCT, determine the feasibility of replicating the CHOICES trial as a 24-mo multi-site, community-based study with Internet- and web-based recruitment, delivery, and retention strategies. The recruitment and retention rates and NAB consultation will guide design of procedures for a multi-site national effectiveness study of the CHOICES intervention.