TY - JOUR
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.
N1 - Funding Information:
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.
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.
AB - 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.
KW - Longitudinal follow-up
KW - Randomized controlled trial
KW - Reproductive behavior
KW - Sickle cell disease
KW - Sickle cell trait
KW - Young adult
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U2 - 10.1007/s10897-015-9874-0
DO - 10.1007/s10897-015-9874-0
M3 - Article
C2 - 26310871
AN - SCOPUS:84961201000
VL - 25
SP - 325
EP - 336
JO - Journal of Genetic Counseling
JF - Journal of Genetic Counseling
SN - 1059-7700
IS - 2
ER -