Tailored education for informed preproductive decisions in sickle cell disease

许多患有镰状细胞病(SCO)或镰状细胞性状(SCT)的人缺乏足够的生殖健康 了解这种疾病的遗传传播给他们的孩子。我们建议分两个阶段进行研究 成年男性和女性，年龄18至35岁，患有SCD或SCT，从SCD临床护理或 芝加哥的社区网站。一个阶段是形成期，另一个是纵向随机对照阶段 比较常规护理或常规护理加选择对生殖健康知识的影响的试验， 意图和行为。选择干预是一种基于互联网的、量身定制的多媒体教育 关于生殖选择和后果的计划，旨在帮助患有SCD的男性和女性 或SCT实施育儿计划，以支持他们知情的生殖健康决定，并 生殖健康行为。在第一阶段，我们将对50名成年人进行有声思考的访谈。 当他们审查选择的干预和研究工具并重新管理研究工具时，3-4周 之后进行可靠性评估。使用阶段1的调查结果，我们将改进选择干预和 乐器。我们期望有声思考访谈将支持可行性和文化适当性。 工具和重测的选择、干预和有效性将支持可靠性。在第二阶段。我们 将在200名成年人(一半患有SCD，一半患有SCT)中进行为期两年的随机重复测量试验，以： 比较常规护理或常规护理加选择对SC生殖健康的即时影响 知识、知情的生殖健康决定和实施育儿计划的意向； 2)确定对SC生殖健康知识和知情生殖的持续影响 健康决定(6-12个月)和生殖健康行为(6、12、18、24个月)。在6点 &12个月，我们将为选择小组提供为他们量身定做的选择教育助推器 后测、6个月和12个月的知识缺陷；以及3)描述个人因素和 与生殖健康意向和行为有关的主观规范和其他人口统计因素 在为期两年的研究中。我们假设即刻(后测)和持续(6-12个月)的SC 在选择中，知识得分和知情决定得分将高于普通护理组；a 选择组比常规护理组(A)的比例更大，他们将报告实施 育儿计划(在测试后，6个月和12个月)；和(B)生殖健康行为符合 育儿计划(6个月、12个月、18个月和24个月)。我们还期望描述个人和主观方面的变化 选择组和常规护理组在两年研究期内的常模因素。最终我们会好起来的 定位于领导一项全国性的多中心研究，将选择转化为SCD的常规临床护理 这将提供关于SCD和SCT基因传播的迫切需要的教育。

Many people with sickle cell disease (SCO) or sickle cell trait (SCT) lack sufficient reproductive health knowledge about the genetic transmission of the condition to their children. We propose a two-phase study of adult men and women, aged 18 to 35 years, with SCD or SCT, and recruited from SCD clinical care or community sites in Chicago. One phase is formative and the other is a longitudinal, randomized controlled trial to compare the effects of usual care or usual care plus CHOICES on reproductive health knowledge, intentions, and behaviors. The CHOICES intervention is an Internet-based, tailored, multimedia education program about reproductive options and consequences, and is designed to help men and women with SCD or SCT to implement a parenting plan that will support their informed reproductive health decisions and reproductive health behaviors. In phase 1. we will conduct think aloud interviews with a group of 50 adults as they review the CHOICES intervention and study instruments and readminister study tools 3-4 weeks afterward to assess reliability. Using findings from phase 1, we will refine the CHOICES intervention and instruments. We expect that the think aloud interviews will support the feasibility and cultural appropriateness of the CHOICES intervention and validity of the instruments and retest will support reliability. In phase 2. we will conduct a 2-year, randomized, repeated measures trial in 200 adults (half with SCD, half with SCT) to: compare immediate effects of usual care or usual care plus CHOICES on SC reproductive health knowledge, informed reproductive health decisions, and intention to implement a parenting plan; 2) determine the sustained effects on SC reproductive health know-ledge and Informed reproductive health decisions (at 6 & 12 months) and reproductive health behaviors (at 6,12,18, & 24 months). At 6 & 12 months, we will provide the CHOICES group with a booster of the CHOICES education tailored to their knowledge deficits at posttest and at 6 and 12 months; and 3) describe changes in personal factors and subjective norms, and other demographic factors related to reproductive health intentions and behavior during the two-year study. We hypothesize that immediate (posttest) and sustained (6 & 12 months) SC knowledge scores and informed decisions scores will be greater in the CHOICES than usual care groups; a larger proportion of the CHOICES group than usual care group (a) will report intention to implement a parenting plan (at posttest, 6 & 12 months); and (b) have reproductive health behaviors consistent with the parenting plan (at 6,12,18, & 24 months). We also expect to describe changes in personal and subjective norm factors over the 2 year study period in the CHOICES and usual care groups. Ultimately we will be well positioned to lead a Nationwide, multicenter study translating CHOICES into routine clinical care of SCD patients, which would provide the sorely needed education about the genetic transmission of SCD and SCT.