Department of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, Michigan, USA.
Genet Med. 2012 Aug;14(8):742-8. doi: 10.1038/gim.2012.37. Epub 2012 Apr 12.
Brief, effective models of patient genetic education are needed for common, complex diseases. Using Alzheimer disease as a model, we compared participants' risk knowledge and recall in extended versus condensed education protocols.
A four-site randomized clinical trial enrolled 280 first-degree relatives of individuals with Alzheimer disease (mean age = 58 years, 71% female); each received lifetime Alzheimer disease risk information (range: 13-74%) that incorporated apolipoprotein E genotype. In the condensed protocol, participants received an educational brochure in place of an in-person education session. Outcomes were assessed at 6 weeks and 6 months following risk disclosure.
The condensed protocol required less clinician time than the extended protocol (mean = 34 min vs. 77 min). The groups did not differ on recall of apolipoprotein E genotype or lifetime risk, and most participants in both groups recalled and retained this information over time. Both groups showed improvement from baseline in Alzheimer disease risk knowledge (e.g., understanding the magnitude of apolipoprotein E genotype effect on risk).
A condensed protocol for communicating genetic risk for Alzheimer disease achieved similar educational results as an extended protocol in this study. Further research should explore the efficacy of brief genetic education protocols for complex diseases in diverse populations.
需要针对常见的复杂疾病制定简短有效的患者遗传教育模型。以阿尔茨海默病为例，我们比较了扩展和浓缩教育方案中参与者的风险知识和回忆能力。
一项四项随机临床试验招募了 280 名阿尔茨海默病患者的一级亲属（平均年龄=58 岁，71%为女性）；每位参与者都接受了包含载脂蛋白 E 基因型的阿尔茨海默病终身风险信息（范围：13-74%）。在浓缩方案中，参与者收到了教育手册，而不是面对面的教育课程。在风险披露后的 6 周和 6 个月评估结果。
浓缩方案比扩展方案需要更少的临床医生时间（平均=34 分钟对 77 分钟）。两组在载脂蛋白 E 基因型或终身风险的回忆方面没有差异，并且大多数参与者在两组中都随着时间的推移回忆和保留了这些信息。两组在阿尔茨海默病风险知识方面均较基线有所提高（例如，理解载脂蛋白 E 基因型对风险的影响程度）。
本研究中，传达阿尔茨海默病遗传风险的浓缩方案与扩展方案取得了相似的教育效果。进一步的研究应该探索针对复杂疾病的简短遗传教育方案在不同人群中的效果。
