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Journal of Genetic Counseling

, Volume 25, Issue 2, pp 325–336 | Cite as

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

  • Agatha M. Gallo
  • Diana J. Wilkie
  • Yingwei Yao
  • Robert E. Molokie
  • Christiane Stahl
  • Patricia E. Hershberger
  • Zhongsheng Zhao
  • Marie L. Suarez
  • Bonnye Johnson
  • Rigoberto Angulo
  • Jesus Carrasco
  • Veronica Angulo
  • Alexis A. Thompson
Original Research

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.

Keywords

Sickle cell disease Sickle cell trait Reproductive behavior Young adult Randomized controlled trial Longitudinal follow-up 

Notes

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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Copyright information

© National Society of Genetic Counselors, Inc. 2015

Authors and Affiliations

  • Agatha M. Gallo
    • 1
  • Diana J. Wilkie
    • 2
    • 3
  • Yingwei Yao
    • 2
    • 3
  • Robert E. Molokie
    • 4
    • 5
  • Christiane Stahl
    • 6
  • Patricia E. Hershberger
    • 7
  • Zhongsheng Zhao
    • 2
  • Marie L. Suarez
    • 2
  • Bonnye Johnson
    • 4
  • Rigoberto Angulo
    • 2
  • Jesus Carrasco
    • 2
  • Veronica Angulo
    • 2
  • Alexis A. Thompson
    • 8
    • 9
  1. 1.Department of Women, Family and Children Health Science, College of NursingUniversity of Illinois at ChicagoChicagoUSA
  2. 2.Department of Biobehavioral Health ScienceUniversity of Illinois at ChicagoChicagoUSA
  3. 3.Department of Biobehavioral Nursing ScienceUniversity of FloridaGainesvilleUSA
  4. 4.Department of MedicineUniversity of Illinois at ChicagoChicagoUSA
  5. 5.Jesse Brown Veterans Administration Medical CenterChicagoUSA
  6. 6.Department of PediatricsUniversity of Illinois at ChicagoChicagoUSA
  7. 7.Department of Health Systems ScienceUniversity of Illinois at ChicagoChicagoUSA
  8. 8.Division of Hematology/Oncology/Stem Cell TransplantationAnn and Robert H. Lurie Children’s Hospital of ChicagoChicagoUSA
  9. 9.Northwestern University-Feinberg School of MedicineChicagoUSA

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