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
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.
Department of Biobehavioral Health Science, University of Illinois at Chicago, Chicago, IL, USA.
J Genet Couns. 2016 Apr;25(2):325-36. doi: 10.1007/s10897-015-9874-0. Epub 2015 Aug 28.
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.
长期以来,旨在帮助镰状细胞病(SCD)或镰状细胞性状(SCT)患者群体进行生殖健康决策的干预措施,其效果未经证实。我们的目的是比较基于网络的多媒体教育项目“选择”(CHOICES)和常规护理教育(电子书)在24个月内对生殖知识、意愿和行为的影响,“选择”项目旨在帮助实施明智的生殖计划。我们将234名患有SCD(n = 138)或SCT(n = 96)的参与者(年龄在18 - 35岁之间,35%为男性,94%为非裔美国人)随机分为“选择”组和电子书组。参与者在干预前以及干预后(6、12、18和24个月)四次完成镰状细胞特异性生殖测量。与电子书组相比,“选择”组随着时间推移在知识方面有显著更多的改善(p = 0.004),但在意愿方面(p = 0.18)或行为方面(p = 0.69)并非如此。在基线时,114名(48.7%)参与者报告其伴侣不会使夫妻生育患SCD孩子的风险增加。在116名(49.6%)有风险的参与者中,与电子书组相比,“选择”组中到最后一次随访时选择降低风险伴侣的比例更高(p = 0.04)。研究结果为设计一项针对伴侣状况使其生育患SCD孩子有风险的受试者的“选择”干预全国性试验提供了重要见解。