Reproductive Health CHOICES for Young Adults with Sickle Cell Disease or Trait: Randomized Controlled Trial Outcomes over Two Years
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Interventions to assist reproductive health decision-making in populations affected by sickle cell disease (SCD) or trait (SCT) lack proven efficacy over time. Our aim was to compare effects of CHOICES, a Web-based multimedia education program on implementing informed reproductive plans, and usual care education (e-Book) on reproductive knowledge, intention, and behavior over 24 months. We randomized 234 participants with SCD (n = 138) or SCT (n = 96) (age 18–35 years, 35 % male, 94 % African American) to CHOICES and e-Book groups. Participants completed a sickle cell-specific reproductive measure before and four times after the intervention (6, 12, 18 and 24 months). Compared to the e-Book group the CHOICES group had significantly more improvement in knowledge over time (p = .004) but not intention (p = .18) or behavior (p = .69). At baseline, 114 (48.7 %) participants reported having partners who would not put the couple at risk for their children inheriting SCD. Of the 116 (49.6 %) at-risk participants, a higher poroportion of those who were in the CHOICES group chose partners that reduced their risk by the last visit than the e-Book group (p = .04). Study findings provide important insights for designing a national trial of the CHOICES intervention focusing on subjects whose partner status puts them at risk for having a child with SCD.
KeywordsSickle cell disease Sickle cell trait Reproductive behavior Young adult Randomized controlled trial Longitudinal follow-up
The research and this publication were made possible by Grant Numbers U54HL090513 and R01HL114404 from the National Institutes of Health (NIH), National Heart, Lung, and Blood Institute (NHLBI). Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the NIH or NHLBI. The final peer-reviewed manuscript is subject to the National Institutes of Health Public Access Policy. We extend special thanks to the Lay Advisory Board members who guided the development of the CHOICES intervention and all the study participants who showed extraordinary commitment to increasing knowledge about sickle cell conditions.
Conflict of Interest
Drs. Wilkie and Molokie are co-investigators on an unrelated grant funded by Pfizer. Dr. Wilkie is Chairman and Founder of eNURSING llc. All other authors declare no conflicts.
Human Studies and Informed Consent
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.
No animal studies were carried out by the authors for this article
- Ajzen, I., & Fishbein, M. (1980). Predicting behavior from intentions. In I. Ajzen (Ed.), Understanding attitudes and predicting social behavior (pp. 46–52). Englewood Cliffs: Prentice-Hall, Inc.Google Scholar
- Alswaidi, F. M., Memish, Z. A., O’Brien, S. J., Al-Hamdan, N. A., Al-Enzy, F. M., Alhayani, O. A., & Al-Wadey, A. M. (2012). At-risk marriages after compulsory premarital testing and counseling for beta-thalassemia and sickle cell disease in Saudi Arabia, 2005–2006. Journal of Genetic Counseling, 21(2), 243–255.CrossRefGoogle Scholar
- Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, Division of Blood Disorders (2015). Sickle cell trait toolkit. Retrieved from https://doi.org/www.cdc.gov/ncbddd/traits.html.
- Gallo, A. M., Wilkie, D. J., Labotka, R. J., Molokie, R. E., Stahl, C., Hershberger, P. E., & Thompson, A. (2014). Evaluation of the SCKnowIQ tool and reproductive CHOICES intervention among young adults with sickle cell disease or sickle cell trait. Clinical Nursing Research, 23(4), 421–441.CrossRefGoogle Scholar
- Hershberger, P. E., Gallo, A. M., Molokie, R., Thompson, A. A., Suarez, M. L., Yao, Y., & Wilkie, D. J. (2015). Perception of young adults with sickle cell disease or sickle cell trait about participation in the CHOICES randomized controlled trial. Journal of Advanced Nursing. Google Scholar
- Kolb, D. A., Boyatzis, R. E., & Mainemelis, C. (2000). Experiential learning theory: Previous research and new directions. In R. J. Sternberg & L. F. Zhang (Eds.), Perspectives on cognitive, learning, and thinking styles (pp. 227–248). Mahwah: Lawrence Erlbaum.Google Scholar
- Long, K. A., Thomas, S. B., Grubs, R. E., Gettig, E. A., & Krishnamurti, L. (2011). Attitudes and beliefs of African-Americans toward genetics, genetic testing, and sickle cell disease education and awareness. Journal of Genetic Counseling, 20(6), 572–592. doi: https://doi.org/10.1007/s10897-011-9388-3.CrossRefGoogle Scholar
- McClish, D. K., Penberthy, L. T., Bovbjerg, V. E., Roberts, J. D., Aisiku, I. P., Levenson, J. L., & Roseff, S. D. (2005). Health related quality of life in sickle cell patients: The PiSCES project, Health and Quality of Life Outcomes, 3, Retrieved from https://doi.org/www.hqlo.com/content/3/1/50ally.
- Ojodu, J., Hulihan, M. M., Pope, S. N., & Grant, A. M. (2014). Incidence of sickle cell trait-United States, 2010. CDC, Morbidity and Mortality Weekly Report (MMWR), 63(49), 1155–1158.Google Scholar
- Team, R. D. C. (2011). R: a language and environment for statistical computing. Vienna, Austria: R Foundation for Statistical Computing. Retrieved from https://doi.org/www.R-project.org.
- Wilkie, D. J., Gallo, A. M., Yao, Y., Molokie, R. E., Stahl, C., Hershberger, P. E., & Thompson, A. A. (2013). Reproductive health choices for young adults with sickle cell disease or trait: randomized controlled trial immediate posttest effects. Nursing Research, 62(5), 352–361.CrossRefGoogle Scholar
- Yawn, B. P., Buchanan, G. R., Afenyi-Annan, A. N., Ballas, S. K., Hassell, K. L., James, A. H., & John-Sowah, J. (2014). Management of sickle cell disease: summary of the 2014 evidence-based report by expert panel members. Journal of the American Medical Association, 312(10), 1033–1048.CrossRefGoogle Scholar