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.
authors: 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. agallo@uic.edu.
authors: Agatha M
authors: AM
authors: Gallo
authors: Department of Biobehavioral Health Science, University of Illinois at Chicago, Chicago, IL, USA.|Department of Biobehavioral Nursing Science, University of Florida, Gainesville, FL, USA.
authors: Diana J
authors: DJ
authors: Wilkie
authors: Department of Biobehavioral Health Science, University of Illinois at Chicago, Chicago, IL, USA.|Department of Biobehavioral Nursing Science, University of Florida, Gainesville, FL, USA.
authors: Yingwei
authors: Y
authors: Yao
authors: Department of Medicine, University of Illinois at Chicago, Chicago, IL, USA.|Jesse Brown Veterans Administration Medical Center, Chicago, IL, USA.
authors: Robert E
authors: RE
authors: Molokie
authors: Department of Pediatrics, University of Illinois at Chicago, Chicago, IL, USA.
authors: Christiane
authors: C
authors: Stahl
authors: Department of Health Systems Science, University of Illinois at Chicago, Chicago, IL, USA.
authors: Patricia E
authors: PE
authors: Hershberger
authors: Department of Biobehavioral Health Science, University of Illinois at Chicago, Chicago, IL, USA.
authors: Zhongsheng
authors: Z
authors: Zhao
authors: Department of Biobehavioral Health Science, University of Illinois at Chicago, Chicago, IL, USA.
authors: Marie L
authors: ML
authors: Suarez
authors: Department of Medicine, University of Illinois at Chicago, Chicago, IL, USA.
authors: Bonnye
authors: B
authors: Johnson
authors: Department of Biobehavioral Health Science, University of Illinois at Chicago, Chicago, IL, USA.
authors: Rigoberto
authors: R
authors: Angulo
authors: Department of Biobehavioral Health Science, University of Illinois at Chicago, Chicago, IL, USA.
authors: Jesus
authors: J
authors: Carrasco
authors: Department of Biobehavioral Health Science, University of Illinois at Chicago, Chicago, IL, USA.
authors: Veronica
authors: V
authors: Angulo
authors: Division of Hematology/Oncology/Stem Cell Transplantation, Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.|Northwestern University-Feinberg School of Medicine, Chicago, IL, USA.
authors: Alexis A
authors: AA
authors: Thompson
mesh_terms: D000293:Adolescent; D000328:Adult; D001741:Black or African American / Q000235:genetics / Q000523:psychology; D000755:Anemia, Sickle Cell / Q000175:diagnosis / Q000235:genetics*; D002755:Choice Behavior; D005260:Female; D005817:Genetic Counseling / Q000523:psychology*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D010641:Phenotype; D043762:Reproductive Behavior; D040242:Risk Reduction Behavior; D012805:Sickle Cell Trait / Q000175:diagnosis / Q000235:genetics*; D055815:Young Adult
keywords: Longitudinal follow-up; Randomized controlled trial; Reproductive behavior; Sickle cell disease; Sickle cell trait; Young adult