Many people with sickle cell disease (SCO) or sickle cell trait (SCT) lack sufficient reproductive healthknowledge about the genetic transmission of the condition to their children. We propose a two-phase studyof adult men and women, aged 18 to 35 years, with SCD or SCT, and recruited from SCD clinical care orcommunity sites in Chicago. One phase is formative and the other is a longitudinal, randomized controlledtrial 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 educationprogram about reproductive options and consequences, and is designed to help men and women with SCDor SCT to implement a parenting plan that will support their informed reproductive health decisions andreproductive health behaviors. In phase 1. we will conduct think aloud interviews with a group of 50 adultsas they review the CHOICES intervention and study instruments and readminister study tools 3-4 weeksafterward to assess reliability. Using findings from phase 1, we will refine the CHOICES intervention andinstruments. We expect that the think aloud interviews will support the feasibility and cultural appropriatenessof the CHOICES intervention and validity of the instruments and retest will support reliability. In phase 2. wewill 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 healthknowledge, informed reproductive health decisions, and intention to implement a parenting plan;2) determine the sustained effects on SC reproductive health know-ledge and Informed reproductivehealth 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 theirknowledge deficits at posttest and at 6 and 12 months; and 3) describe changes in personal factors andsubjective norms, and other demographic factors related to reproductive health intentions and behaviorduring the two-year study. We hypothesize that immediate (posttest) and sustained (6 & 12 months) SCknowledge scores and informed decisions scores will be greater in the CHOICES than usual care groups; alarger proportion of the CHOICES group than usual care group (a) will report intention to implement aparenting plan (at posttest, 6 & 12 months); and (b) have reproductive health behaviors consistent with theparenting plan (at 6,12,18, & 24 months). We also expect to describe changes in personal and subjectivenorm factors over the 2 year study period in the CHOICES and usual care groups. Ultimately we will be wellpositioned to lead a Nationwide, multicenter study translating CHOICES into routine clinical care of SCDpatients, which would provide the sorely needed education about the genetic transmission of SCD and SCT.
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