Reproductive Health Choices for Young Adults With Sickle Cell Disease or Trait

Abstract

Background People with sickle cell disease (SCD) or sickle cell trait (SCT) may not have information about genetic inheritance needed for making informed reproductive health decisions. CHOICES is a web-based, multimedia educational intervention that provides information about reproductive options and consequences to help those with SCD or SCT identify and implement an informed parenting plan. Efficacy of CHOICES compared with usual care must be evaluated. Objective The purpose was to compare immediate posttest effects of CHOICES versus an attention control usual care intervention (e-Book) on SCD/SCT-related reproductive health knowledge, intention, and behavior. Methods In a randomized controlled study, we recruited subjects with SCD/SCT from clinics, community settings, and online networks with data collected at sites convenient to the 234 subjects with SCD (n = 136) or SCT (n = 98) (age ranged from18-35 years, 65% were female, and 94% were African American). Subjects completed a measure of sickle cell reproductive knowledge, intention, and behavior before and immediately after the intervention. Results Compared to the e-Book group, the CHOICES group had significantly higher average knowledge scores and probability of reporting a parenting plan to avoid SCD or SCD and SCT when pretest scores were controlled. Effects on intention and planned behavior were not significant. The CHOICES group showed significant change in their intention and planned behavior; the e-Book group did not show significant change in their intention, but their planned behavior differed significantly. Discussion Initial efficacy findings are encouraging but warrant planned booster sessions and outcome follow-ups to determine sustained intervention efficacy on reproductive health knowledge, intention, and actual behavior of persons with SCD/SCT.

Perception of young adults with sickle cell disease or sickle cell trait about participation in the CHOICES randomized controlled trial

“…The criteria for selection of the participants for the RCT are reported elsewhere (Wilkie et al . ).…”

“…We then conducted a 2‐year randomized controlled trial (RCT) where the immediate post‐test effects of the CHOICES program demonstrated increased reproductive health knowledge and intentions to implement a parenting plan prior to pregnancy compared with the e‐Book or usual care program (Wilkie et al . ). Although these findings were encouraging, insights about the participants’ views about parenthood and study participation would strengthen educational efforts and guide development of a national representative intervention study.…”

Youth with Sickle Cell Disease: Genetic and Sexual Health Education Needs

“…Whereas other studies have examined important topics like reproductive decision making and genetic inheritance knowledge of individuals with SCD or SCT, few if any addressed sexual health and genetic knowledge and needs of youth with SCD. 36,37 …”

Reproductive intentions in mothers of young children with sickle cell disease

“…This is consistent in our study in that a minority of participants thought that it is possible to have a child with SCD prior to pregnancy even in those who knew their SCT status. Educational interventions, similar to the web‐based CHOICES, could be beneficial in providing education and altering intentions, though longer follow‐up may be necessary to see an advantage 3,31 . Further research is needed to understand the optimal interventions.…”