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Reproductive Health CHOICES for Young Adults with Sickle Cell Disease or Trait: Randomized Controlled Trial Outcomes over Two Years

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

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.

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References

  • Acharya, K., Lang, C. W., & Ross, L. F. (2009). A pilot study to explore knowledge, attitudes, and beliefs about sickle cell trait and disease. Journal of the National Medical Association, 101(11), 1163–1172.

    Article  PubMed  Google Scholar 

  • 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 

  • Alayed, N., Kezouh, A., Oddy, L., & Abenhaim, H. A. (2014). Sickle cell disease and pregnancy outcomes: population-based study on 8.8 million births. Journal of Perinatal Medicine, 42(4), 487–492.

    Article  CAS  PubMed  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.

    Article  PubMed  Google Scholar 

  • Asgharian, A., & Anie, K. A. (2003). Women with sickle cell trait: reproductive decision-making. Journal of Reproductive and Infant Psychology, 21(1), 23–34.

    Article  Google Scholar 

  • Baker, S. A., Morrison, D. M., Carter, W. B., & Verdon, M. S. (1996). Using the theory of reasoned action (TRA) to understand the decision to use condoms in an STD clinic population. Health Education Quarterly, 23(4), 528–542.

    Article  CAS  PubMed  Google Scholar 

  • Brown, K., Dormandy, E., Reid, E., Gulliford, M., & Marteau, T. (2011). Impact on informed choice of offering antenatal sickle cell and thalassaemia screening in primary care: a randomized trial. Journal of Medical Screening, 18(2), 65–75.

    Article  PubMed  PubMed Central  Google 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.

  • Collins, L. M., Schafer, J. L., & Kam, C. M. (2001). A comparison of inclusive and restrctive strategies in modern missing data procedures. Psychological Methods, 6(4), 330–351.

    Article  CAS  PubMed  Google Scholar 

  • DeBaun, M. R. (2014a). Hydroxyurea therapy contributes to infertility in adult men with sickle cell disease: a review. Expert Review of Hematology, 7(6), 767–773.

    Article  CAS  PubMed  Google Scholar 

  • DeBaun, M. R. (2014b). Perspectives: thinking beyond survival. Nature, 515, S16.

    Article  PubMed  Google Scholar 

  • Doswell, W. M., Braxter, B. J., Cha, E., & Kim, K. H. (2011). Testing the theory of reasoned action in explaining sexual behavior among African American young teen girls. Journal of Pediatric Nursing, 26(6), e45–e54.

    Article  PubMed  Google Scholar 

  • Gallo, A. M., Knafl, K. A., & Angst, D. B. (2009). Information management in families who have a child with a genetic condition. Journal f Pediatric Nursing, 24(3), 194–204. doi:https://doi.org/10.1016/j.pedn.2008.07.010.

    Article  Google Scholar 

  • Gallo, A. M., Wilkie, D., Suarez, M., Labotka, R., Molokie, R., Thompson, A., & Johnson, B. (2010). Reproductive decisions in people with sickle cell disease or sickle cell trait. Western Journal of Nursing Research, 32(8), 1073–1090.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Hamideh, D., & Alvarez, O. (2013). Sickle cell disease related mortality in the United States (1999–2009). Pediatric Blood & Cancer, 60, 1482–1486.

    Article  Google 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.

  • Hill, S. A. (1994). Motherhood and the obfuscation of medical knowledge: the case of sickle cell disease. Gender and Society, 8, 29–47.

    Article  Google Scholar 

  • Kaslow, N. J., Collins, M. H., Rashid, F. L., Baskin, M. L., Griffith, J. R., Hollins, L., & Eckman, J. E. (2000). The efficacy of a pilot family psychoeducational intervention for pediatric sickle cell disease (SCD). Families, Systems & Health, 18(4), 381–404.

    Article  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 

  • Koniak-Griffin, D., & Stein, J. A. (2006). Predictors of sexual risk behaviors among adolescent mothers in a human immunodeficiency virus prevention program. Journal of Adolescent Health, 38(3), 297 e291–211.

    Article  Google Scholar 

  • Koniak-Griffin, D., Lesser, J., Nyamathi, A., Uman, G., Stein, J. A., & Cumberland, W. G. (2003a). Project CHARM: an HIV prevention program for adolescent mothers. Family & Community Health, 26(2), 94–107.

    Article  Google Scholar 

  • Koniak-Griffin, D., Lesser, J., Uman, G., & Nyamathi, A. (2003b). Teen pregnancy, motherhood, and unprotected sexual activity. Research in Nursing & Health, 26(1), 4–19.

    Article  Google Scholar 

  • Koontz, K., Short, A. D., Kalinyak, K., & Noll, R. (2004). A randomized, controlled pilot trial of a school intervention for children with sickle cell anemia. Journal of Pediatric Psychology, 29(1), 7–17.

    Article  PubMed  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.

    Article  PubMed  Google Scholar 

  • Matts, J. P., & Lachin, J. M. (1988). Properties of permuted-block randomization in clinical trials. Controlled Clinical Trials, 9(4), 327–344.

    Article  CAS  PubMed  Google 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.

  • Modell, B., & Darlison, M. (2008). Global epidemiology of haemoglobin disorders and derived service indicators. Bulletin of the World Health Organization, 86(6), 480–487.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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 

  • Okunlola, M. A., Olutayo, A. A., Okonkwo, N. S., & Akingbola, T. S. (2010). Pattern of contraceptive use among women with sickle cell disease in Ibadan, South-west Nigeria. Journal of Obstetrics and Gynaecology, 30(2), 171–174.

    Article  CAS  PubMed  Google Scholar 

  • Pivetti, M., & Melotti, G. (2013). Prenatal genetic testing: an investigation of determining factors affecting the decision-making process. Journal of Genetic Counseling, 22(1), 76–89. doi:https://doi.org/10.1007/s10897-012-9498-6.

    Article  PubMed  Google Scholar 

  • Platt, O. S., Brambilla, D. J., Rosse, W. F, Castro, O., Stein, M. H., & Klug, P. P. (1994). Mortality of sickle cell disease. Life expectancy and risk factors for early death. New England Journal of Medicine, 330(23), 1639–1644.

    Article  CAS  Google Scholar 

  • Pleasants, S. (2014). Sickle cell disease epidemiology: a moving target. Nature, 515, S2–S3.

    Article  PubMed  Google Scholar 

  • Powars, D. R., Chan, L. S., Hiti, A., Ramicone, E., & Johnson, C. (2005). Outcome of sickle cell anemia: a 4-decade observational study of 1056 patients. Medicine (Baltimore), 84(6), 363–376.

    Article  Google Scholar 

  • Quinn, C. T., Rogers, Z. R., & Buchanan, G. R. (2004). Survival of children with sickle cell disease. Blood, 103(11), 4023–4027.

    Article  CAS  PubMed  Google Scholar 

  • Rogers, D. T, & Molokie, R. (2010). Sickle cell disease in pregnancy. Obstetric & Gynecologic alClinics of North America, 37(2), 223–237.

    Article  PubMed  Google Scholar 

  • Rosengard, C., Phipps, M. G., Adler, M. E., & Ellis, J. M. (2004). Adolescent pregnancy intentions and pregnancy outcomes: a longitudinal examination. Journal of Adolescent Health, 35, 453–461.

    Article  Google Scholar 

  • Rosengard, C., Phipps, M. G., Adler, M. E., & Ellis, J. M. (2005). Psychosocial correlates of adolescent males’ pregnancy intentions. Pediatrics, 116(3), 414–418.

    Article  Google Scholar 

  • Serjeant, G. R. (2010). One hundred years of sickle cell disease. British Journal of Haematology, 151(5), 425–429.

    Article  PubMed  Google Scholar 

  • Siddiqui, S., Schunk, K., Batista, M., Adames, F., Ayala, P., Stix, B., & Green, N. S. (2012). Awareness of sickle cell among people of reproductive age: Dominicans and African Americans in northern Manhattan. Journal of Urban Health, 89(1), 53–58.

    Article  PubMed  Google Scholar 

  • Taylor, C., Kavanagh, P., & Zuckerman, B. (2014). Sickle cell trait--neglected opportunities in the era of genomic medicine. Journal of the American Medical Association, 311(15), 1495–1496.

    Article  CAS  PubMed  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.

  • Wang, S. L., Charron-Prochownik, D., Sereika, S. M., Siminerio, L., & Kim, Y. (2006). Comparing three theories in predicting reproductive health behavioral intention in adolescent women with diabetes. Pediatric Diabetes, 7(2), 108–115.

    Article  CAS  PubMed  Google Scholar 

  • Wesley, Y., Smeltzer, S. C., Redeker, N. S., Walker, S., Palumbo, P., & Whipple, B. (2000). Reproductive decision making in mothers with HIV-1. Health Care for Women International, 21(4), 291–304.

    Article  CAS  PubMed  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • Wonkam, A., & Hurst, S. (2014). A call for policy action in sub-Saharan Africa to rethink diagnostics for pregnancy affected by sickle cell disease: differential views of medical doctors, parents and adult patients predict value conflicts in Cameroon. OMICS, 18(7), 472–480.

    Article  CAS  PubMed  PubMed Central  Google 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.

    Article  PubMed  CAS  Google Scholar 

  • Yusuf, H. R., Lloyd-Puryear, M. A., Grant, A. M., Parker, C. S., Creary, M. S., & Atrash, H. K. (2011). Sickle cell disease: the need for a public health agenda. American Journal of Preventive Medicine, 41(6 Suppl 4), S376–S383.

    Article  PubMed  Google Scholar 

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Acknowledgments

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.

Animal Studies

No animal studies were carried out by the authors for this article

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Authors and Affiliations

  1. Department of Women, Family and Children Health Science, College of Nursing, University of Illinois at Chicago, 845 S. Damen Avenue, MC 802, Chicago, IL, 60612-7352, USA

    Agatha M. Gallo

  2. Department of Biobehavioral Health Science, University of Illinois at Chicago, Chicago, IL, USA

    Diana J. Wilkie, Yingwei Yao, Zhongsheng Zhao, Marie L. Suarez, Rigoberto Angulo, Jesus Carrasco & Veronica Angulo

  3. Department of Biobehavioral Nursing Science, University of Florida, Gainesville, FL, USA

    Diana J. Wilkie & Yingwei Yao

  4. Department of Medicine, University of Illinois at Chicago, Chicago, IL, USA

    Robert E. Molokie & Bonnye Johnson

  5. Jesse Brown Veterans Administration Medical Center, Chicago, IL, USA

    Robert E. Molokie

  6. Department of Pediatrics, University of Illinois at Chicago, Chicago, IL, USA

    Christiane Stahl

  7. Department of Health Systems Science, University of Illinois at Chicago, Chicago, IL, USA

    Patricia E. Hershberger

  8. Division of Hematology/Oncology/Stem Cell Transplantation, Ann and Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA

    Alexis A. Thompson

  9. Northwestern University-Feinberg School of Medicine, Chicago, IL, USA

    Alexis A. Thompson

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  1. Agatha M. Gallo
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  2. Diana J. Wilkie
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  4. Robert E. Molokie
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  7. Zhongsheng Zhao
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  10. Rigoberto Angulo
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  13. Alexis A. Thompson
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Correspondence to Agatha M. Gallo.

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Gallo, A.M., Wilkie, D.J., Yao, Y. et al. Reproductive Health CHOICES for Young Adults with Sickle Cell Disease or Trait: Randomized Controlled Trial Outcomes over Two Years. J Genet Counsel 25, 325–336 (2016). https://doi.org/10.1007/s10897-015-9874-0

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  • DOI: https://doi.org/10.1007/s10897-015-9874-0

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