Faculty of Social Sciences, Business, and Economics, Åbo Akademi University, Turku, Finland.
Institute of Biomedicine, University of Turku, Turku, Finland.
Clin Genet. 2021 Apr;99(4):529-539. doi: 10.1111/cge.13907. Epub 2021 Jan 12.
Rare heritable syndromes may affect educational attainment. Here, we study education in neurofibromatosis 1 (NF1) that is associated with multifaceted medical, social and cognitive consequences. Educational attainment in the Finnish population-based cohort of 1408 individuals with verified NF1 was compared with matched controls using Cox proportional hazards model with delayed entry and competing risk for death. Moreover, models accounting for the effects of cancer at age 15-30 years, parental NF1 and developmental disorders were constructed. Overall, the attainment of secondary education was reduced in individuals with NF1 compared to controls (hazard ratio 0.83, 95%CI 0.74-0.92). History of cancer and developmental disorders were major predictors of lack of secondary education. Individuals with NF1 obtained vocational secondary education more often than general upper secondary education. Consequently, NF1 decreased the attainment of Bachelor's and Master's degrees by 46%-49% and 64%-74%, respectively. Surprisingly, the non-NF1 siblings of individuals with NF1 also had lower educational attainment than controls, irrespective of parental NF1. In conclusion, NF1 is associated with reduced educational attainment and tendency for affected individuals to obtain vocational instead of academic education. Individuals living with NF1, especially those with cancer, developmental disorders or familial NF1, need effective student counseling and learning assistance.
罕见的遗传性综合征可能会影响受教育程度。在这里，我们研究了与多种医学、社会和认知后果相关的神经纤维瘤病 1（NF1）的教育程度。使用具有延迟进入和因死亡而产生竞争风险的 Cox 比例风险模型，将确诊为 NF1 的 1408 名芬兰人群队列中的个体的教育程度与匹配的对照组进行比较。此外，还构建了考虑 15-30 岁癌症、父母 NF1 和发育障碍影响的模型。总体而言，与对照组相比，NF1 个体获得中学教育的程度降低（风险比 0.83，95%CI 0.74-0.92）。癌症和发育障碍史是缺乏中学教育的主要预测因素。NF1 个体更常获得职业中学教育，而不是普通高级中学教育。因此，NF1 分别使学士学位和硕士学位的获得率降低了 46%-49%和 64%-74%。令人惊讶的是，NF1 个体的非 NF1 兄弟姐妹的受教育程度也低于对照组，而与父母的 NF1 无关。总之，NF1 与受教育程度降低以及受影响个体倾向于获得职业教育而非学术教育有关。患有 NF1 的个体，尤其是患有癌症、发育障碍或家族性 NF1 的个体，需要有效的学生咨询和学习支持。
