A1 Journal article (refereed)
A rare disease and education : Neurofibromatosis type 1 decreases educational attainment (2021)

Johansson, E., Kallionpää, R. A., Böckerman, P., Peltonen, J., & Peltonen, S. (2021). A rare disease and education : Neurofibromatosis type 1 decreases educational attainment. Clinical Genetics, 99(4), 529-539. https://doi.org/10.1111/cge.13907

JYU authors or editors

Publication details

All authors or editors: Johansson, Edvard; Kallionpää, Roope A.; Böckerman, Petri; Peltonen, Juha; Peltonen, Sirkku

Journal or series: Clinical Genetics

ISSN: 0009-9163

eISSN: 1399-0004

Publication year: 2021

Volume: 99

Issue number: 4

Pages range: 529-539

Publisher: Wiley-Blackwell

Publication country: United States

Publication language: English

DOI: https://doi.org/10.1111/cge.13907

Publication open access: Openly available

Publication channel open access: Partially open access channel

Publication is parallel published (JYX): https://jyx.jyu.fi/handle/123456789/73754


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 counselling and learning assistance.

Keywords: hereditary diseases; rare diseases; neurofibromatosis; study performance; level of education

Free keywords: educational attainment; multiorgan syndrome; neurofibromatosis 1; rare disease; school performance

Contributing organizations

Ministry reporting: Yes

Reporting Year: 2021

Preliminary JUFO rating: 1

Last updated on 2021-20-09 at 15:33