Toward understanding family‐related characteristics of young adults with sickle‐cell disease or sickle‐cell trait in the USA

Aims and objectives To describe the family‐related characteristics of young adults with sickle‐cell disease or sickle‐cell trait prior to taking part in a randomised controlled trial on sickle‐cell reproductive health education. Background There is a critical need for educational programmes that target the reproductive needs of young adults with sickle‐cell disease or trait. However, little is known about the family‐related characteristics (i.e., demographic attributes and reproductive health behaviours) in which these young adults live. Design A descriptive cross‐sectional analysis. Method At study enrolment, 234 young adults (mean age = 25·9 years, 65% female) completed the SCKnowIQ questionnaire. Descriptive statistics depict the demographic attributes and reproductive health behaviours of young adults with sickle‐cell disease (n = 138) or trait (n = 96). For group comparisons, independent t tests or Fisher's tests were used, as appropriate. Results Young adults with sickle‐cell trait had significantly higher education, income and health insurance than those with sickle‐cell disease. Both groups believed that sickle‐cell disease was a severe condition. A majority of young adults with sickle‐cell disease (65%) had no children compared to 42% of those with sickle‐cell trait. Most young adults (85% sickle‐cell disease, 82% sickle‐cell trait) were not planning a pregnancy in the next six months, and many used condoms, withdrawal or oral contraceptives. Conclusions Socioeconomic disparities exist between young adults with sickle‐cell disease and sickle‐cell trait. Future research that advances education about how and when to communicate appropriate genetic risk information to partners and children especially for young adults with sickle‐cell trait would be beneficial. Relevance to clinical practice Awareness of the similarities and differences in the family‐related characteristics among young adults with sickle‐cell disease or trait can allow for more tailored reproductive education.