Tailored education for informed preproductive decisions in sickle cell disease

许多镰状细胞病（SCO）或镰状细胞性状（SCT）患者缺乏足够的生殖健康 了解疾病遗传给子女的情况。我们建议进行两阶段研究 年龄在18 - 35岁之间的成年男性和女性，患有SCD或SCT，并从SCD临床护理招募，或 芝加哥的社区网站。一个阶段是形成性的，另一个是纵向的，随机对照的。 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 计划生育的选择和后果，旨在帮助男性和女性与SCD 或SCT实施育儿计划，支持他们做出知情的生殖健康决定， 生殖健康行为。第一阶段。我们将对50名成年人进行有声思维访谈， 当他们审查选择干预和研究工具和重新部长研究工具3-4周 然后，评估可靠性。利用第一阶段的研究结果，我们将完善选择干预措施， 仪器.我们期望有声思维访谈能够支持这种方法的可行性和文化上的适当性 的选择干预和有效性的工具和重测将支持可靠性。在第二阶段我们 将在200名成人（一半患有SCD，一半患有SCT）中进行一项为期2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生殖健康的直接影响 知识、知情的生殖健康决定以及实施育儿计划的意愿; 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和12个月）和生殖健康行为（6，12，18和24个月）。6点 12个月，我们将为选择组提供一个针对他们的选择教育助推器。 后测、6个月和12个月时的知识缺陷; 3）描述个人因素的变化， 主观规范和其他与生殖健康意图和行为相关的人口统计学因素 在为期两年的研究中。我们假设，即时（后测）和持续（6 & 12个月）SC 知识得分和知情决策得分将在选择中比普通护理组更高; a 选择组中比常规护理组（a）更大比例的人将报告打算实施 父母养育计划（后测，6 & 12个月）;和（B）有生殖健康行为符合 育儿计划（6、12、18和24个月）。我们还期望描述个人和主观的变化， 在2年的研究期间，在选择和常规护理组的规范因素。最终我们会没事的 负责领导一项全国性的多中心研究，将CHOICES转化为SCD的常规临床护理 这将提供急需的关于SCD和SCT遗传传播的教育。

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.