Characteristics associated with the perceived likelihood to become parents among young adults with sickle cell disease or sickle cell trait in the USA

Abstract

Individuals with sickle cell disease (SCD) and individuals with sickle cell trait (SCT) have different health trajectories, but it is unknown whether sociodemographic and clinical characteristics are associated with their likelihood to be a parent. The purpose of this study was to examine the sociodemographic and clinical characteristics associated with perceived likelihood-to-parent among a cohort of young adults with SCD or SCT in the USA. The participants were 234 young adults (82 males, 152 females) who had either SCD (n = 138) or SCT (n = 96). The average age was 25.9 years (SD = 4.9), and most participants (87%) were single. Study participants completed the likelihood-to-parent item (0-4 scale) included in the valid and reliable Sickle Cell Reproductive Health Knowledge Parenting Intent and Behavior Questionnaire (SCKnowIQ). The mean likelihood-to-parent score was M = 2.3 (SD = 1.1) and 41% indicated that they were 'very' or 'extremely' likely to be a parent. Bivariate analysis showed that likelihood-to-parent was associated with the participant's sickle cell genotype (p = .03), age (p = .003), educational level (p = .04), income (p = .01), employment (p = .04), number of children (p < .001), health insurance (p = .02), and influenced by others (p < .001). In multiple regression analysis, participants reported higher likelihood-to-parent scores if they had at most 2 children (p = .03), higher income (p = .03), had no insurance (p = .01), and reported higher levels of being influenced by others (p = .001). Additional research is needed to confirm these findings in larger representative samples with more young adult males and to understand the likelihood to become parents over time by implementing longitudinal studies in the SCD and SCT populations. Such research is needed to guide appropriate education and genetic counseling for reproductive decision-making among young adults with SCD or SCT.