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

*Corresponding author for this work

Research output: Contribution to journalArticle

11 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)325-336
Number of pages12
JournalJournal of Genetic Counseling
Volume25
Issue number2
DOIs
StatePublished - Apr 1 2016

Fingerprint

Sickle Cell Trait
Reproductive Health
Sickle Cell Anemia
Young Adult
Randomized Controlled Trials
Education
Multimedia
African Americans
Decision Making
Population

Keywords

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

ASJC Scopus subject areas

  • Genetics(clinical)

Cite this

Gallo, Agatha M. ; Wilkie, Diana J. ; Yao, Yingwei ; Molokie, Robert E. ; Stahl, Christiane ; Hershberger, Patricia E. ; Zhao, Zhongsheng ; Suarez, Marie L. ; Johnson, Bonnye ; Angulo, Rigoberto ; Carrasco, Jesus ; Angulo, Veronica ; Thompson, Alexis A. / Reproductive Health CHOICES for Young Adults with Sickle Cell Disease or Trait : Randomized Controlled Trial Outcomes over Two Years. In: Journal of Genetic Counseling. 2016 ; Vol. 25, No. 2. pp. 325-336.
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title = "Reproductive Health CHOICES for Young Adults with Sickle Cell Disease or Trait: Randomized Controlled Trial Outcomes over Two Years",
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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author = "Gallo, {Agatha M.} and Wilkie, {Diana J.} and Yingwei Yao and Molokie, {Robert E.} and Christiane Stahl and Hershberger, {Patricia E.} and Zhongsheng Zhao and Suarez, {Marie L.} and Bonnye Johnson and Rigoberto Angulo and Jesus Carrasco and Veronica Angulo and Thompson, {Alexis A}",
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Gallo, AM, Wilkie, DJ, Yao, Y, Molokie, RE, Stahl, C, Hershberger, PE, Zhao, Z, Suarez, ML, Johnson, B, Angulo, R, Carrasco, J, Angulo, V & Thompson, AA 2016, 'Reproductive Health CHOICES for Young Adults with Sickle Cell Disease or Trait: Randomized Controlled Trial Outcomes over Two Years', Journal of Genetic Counseling, vol. 25, no. 2, pp. 325-336. https://doi.org/10.1007/s10897-015-9874-0

Reproductive Health CHOICES for Young Adults with Sickle Cell Disease or Trait : Randomized Controlled Trial Outcomes over Two Years. / Gallo, Agatha M.; Wilkie, Diana J.; Yao, Yingwei; Molokie, Robert E.; Stahl, Christiane; Hershberger, Patricia E.; Zhao, Zhongsheng; Suarez, Marie L.; Johnson, Bonnye; Angulo, Rigoberto; Carrasco, Jesus; Angulo, Veronica; Thompson, Alexis A.

In: Journal of Genetic Counseling, Vol. 25, No. 2, 01.04.2016, p. 325-336.

Research output: Contribution to journalArticle

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T1 - Reproductive Health CHOICES for Young Adults with Sickle Cell Disease or Trait

T2 - Randomized Controlled Trial Outcomes over Two Years

AU - Gallo, Agatha M.

AU - Wilkie, Diana J.

AU - Yao, Yingwei

AU - Molokie, Robert E.

AU - Stahl, Christiane

AU - Hershberger, Patricia E.

AU - Zhao, Zhongsheng

AU - Suarez, Marie L.

AU - Johnson, Bonnye

AU - Angulo, Rigoberto

AU - Carrasco, Jesus

AU - Angulo, Veronica

AU - Thompson, Alexis A

PY - 2016/4/1

Y1 - 2016/4/1

N2 - 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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