Sickle Cell Reproductive CHOICES: Efficacy of a Primary Prevention Intervention

描述(由申请者提供)：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)的年轻人做出知情的生殖健康决定。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知情的生殖健康决定，这与对自己或伴侣的SCD/SCT状态或其遗传传播的了解不足或不正确有关。我们将在两组设计中确定12个月、18个月和24个月对生殖知识和生殖健康行为的长期影响，其中包括选择或通常护理注意控制[电子书]干预。在这项混合方法应用中，我们将完成疗效试验，在24个月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(加州、德克萨斯州、北卡罗来纳州、康涅狄格州)计划和试点测试多站点网络研究的可行性。具体目的是：1.对236例18~35岁SCD或SCT的青壮年患者，比较常规护理和选择强化(12个月)组对生殖健康知识和生殖健康行为(12、18和24个月)的持续影响。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通常护理组的更高。目的2.通过对60名受试者的访谈，了解他们对参与AIM1研究的看法和体验，以及在研究期间是什么影响了他们的生殖健康行为。作为控制组或选择组的参与者，我们将确定参与者是否改变其生殖健康行为的条件，这对于解释结果将是重要的，如果定性研究结果表明，则修改干预措施(S)。目的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Choose试验复制为一项24个月的多站点、基于社区的研究的可行性，并采用基于互联网和基于网络的招募、交付和保留策略。招聘和保留率以及NAB咨询将指导对选择干预措施进行多地点国家有效性研究的程序设计。

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.