Genetic Education and Sickle Cell Disease: Feasibility and Efficacy of a Program Tailored to Adolescents
Genetic Education and Sickle Cell Disease: Feasibility and Efficacy of a Program Tailored to Adolescents
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DOI：
10.1097/mph.0000000000000226
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发表时间：
2014-10-01
影响因子：
1.2
通讯作者：
Hankins, Jane S.
中科院分区：
文献类型：
--
作者：
Porter, Jerlym S.;Matthews, Christy S.;Hankins, Jane S.
镰状细胞病（SCD）的遗传知识是重要的，当个人作出生殖决定。本研究评估了向101名患有SCD的青少年提供基本遗传信息的可行性和有效性。参与者在3个时间点完成问卷调查，以测试SCD遗传知识：遗传教育会议前（前测），会议后（后测），6个月后（随访）。通过Wilcoxon符号秩检验比较3个时间点的评分，并通过Wilcoxon-Mann-Whitney和Kruskal-Wallis检验比较组间差异。参与者的中位分数从测试前到测试后以及从测试前到随访都有显著增加。男性的分数变化大于女性。从测试后到随访，评分略有下降。与HbSC/HbS beta（+）-thal基因型和既往无疼痛史的受试者相比，HbSS/HbS beta（0）-塔尔基因型和既往有更多疼痛发作的受试者的中位评分增幅较小;然而，所有组从前测到后测和随访测试均有实质性获益，表明SCD青少年可以学习基本的遗传学。这项研究表明，遗传教育可以成功地纳入过渡到成人护理计划的青少年与SCD。遗传教育应包括在标准的护理计划与SCD青少年，以帮助他们作出知情的生殖选择。
Sickle cell disease (SCD) genetic knowledge is important when individuals make reproductive decisions. This study assessed feasibility and efficacy of delivering basic genetic information to 101 adolescents with SCD. Participants completed a questionnaire to test SCD genetic knowledge at 3 timepoints: before genetic education session (pretest), after the session (posttest), and 6 months later (follow-up). Scores at 3 timepoints were compared by Wilcoxon signed-rank tests, and group differences were compared by Wilcoxon-Mann-Whitney and Kruskal-Wallis tests. Participants' median scores significantly increased from pretest to posttest and from pretest to follow-up. Males had a greater change in scores than females. Scores decreased slightly from posttest to follow-up. Participants with HbSS/HbS beta(0)-thal genotype and participants with more prior pain episodes exhibited a smaller increase in median scores than those with HbSC/HbS beta(+)-thal genotype and no prior pain history; however, all groups had substantial gains from pretest to posttest and follow-up tests demonstrating that adolescents with SCD can learn basic genetics. This study established that genetic education can successfully be incorporated in transition to adult care programs for adolescents with SCD. Genetic education should be included in the standard plan of care for adolescents with SCD to assist them in making informed reproductive choices.