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A rare disease and education : Neurofibromatosis type 1 decreases educational attainment
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
Published inClinical Genetics
DisciplineTaloustiedeEmpirical MicroeconomicsPäätöksentekoa tukeva taloustiede ja talouden kilpailukyky (painoala)Basic or discovery scholarshipEconomicsEmpirical MicroeconomicsPolicy-Relevant Economics and Competitiveness of Economy (focus area)Basic or discovery scholarship
© 2020 The Authors. Clinical Genetics published by John Wiley & Sons Ltd.
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. ...
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Additional information about fundingThe study was funded with grants from the Finnish Cancer Foundation and Turku University Hospital. This work is generated within the European Reference Network on Genetic Tumour Risk Syndromes (ERN GENTURIS)—Project ID No 739547. ERN GENTURIS is partly co-funded by the European Union within the framework of the Third Health Programme “ERN-2016-Framework Partnership Agreement 2017-2021”.
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