Overview
The study will use web-based data collection (SCKnowIQ) and intervention delivery strategies enhanced by nudges and tailored boosters in a sample of 430 adult men and women, aged 18-45 yr with SCD (Sickle Cell Disease) or SCT (Sickle Cell Trait), at-risk, and planning within 2 years to have a child free of SCD.
Description
In a 2-year, randomized, longitudinal, repeated measures, controlled trial in 430 at-risk young adults with SCD (50%) or SCT (50%) to compare the effects of e-Book (electronic-Book) and CHOICES interventions on knowledge and behaviors across time (baseline, immediate posttest, 6, 12, 18, 24 months). The study will provide boosters tailored to knowledge deficits at 6 and 12 months and add monthly reinforcement nudges toward concordant behavior during the first 12 months.
Eligibility
Inclusion Criteria:
- Diagnosis of SCD (HbSS, HbSC (Hemoglobin Sickle C Disease), HbS-beta-0 thalassemia, and HbS-beta+ thalassemia) or report of SCT (SCD is Hgb electrophoresis confirmed; SCT evaluated by SickleScan);
- Able and intends to conceive a child in the next 2 years (first child or another child);
- Speaks and reads English;
- 18 to 45 years;
- At-risk for having a child with SCD (i.e., sexual/ reproductive partner has SCD, SCT, or unknown sickle cell status); and
- Wants to avoid the risk of a child with SCD.
- The age range is based on typical reproductive age for SCD where median survival is 42 years for men and 48 years for women.
Exclusion Criteria:
- Legally blind;
- Physically unable to complete the study questionnaires or the intervention;
- Report health history of hysterectomy, tubal ligation, medically or surgically induced menopause, or vasectomy that would
- Prevent ability to bear children;
- Report a desire to remain childless or have no further children;
- Report knowing or being a relative or friend of a participant previously enrolled in the study, or
- Previous participation in a CHOICES study.