A1 Alkuperäisartikkeli tieteellisessä aikakauslehdessä
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-tekijät tai -toimittajat

Julkaisun tiedot

Julkaisun kaikki tekijät tai toimittajat: Johansson, Edvard; Kallionpää, Roope A.; Böckerman, Petri; Peltonen, Juha; Peltonen, Sirkku

Lehti tai sarja: Clinical Genetics

ISSN: 0009-9163

eISSN: 1399-0004

Julkaisuvuosi: 2021

Ilmestymispäivä: 27.12.2020

Volyymi: 99

Lehden numero: 4

Artikkelin sivunumerot: 529-539

Kustantaja: Wiley-Blackwell

Julkaisumaa: Yhdysvallat (USA)

Julkaisun kieli: englanti

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

Julkaisun avoin saatavuus: Avoimesti saatavilla

Julkaisukanavan avoin saatavuus: Osittain avoin julkaisukanava

Julkaisu on rinnakkaistallennettu (JYX): https://jyx.jyu.fi/handle/123456789/73754

Tiivistelmä

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.

YSO-asiasanat: perinnölliset taudit; harvinaiset taudit; neurofibromatoosi; opintomenestys; koulutustaso

Vapaat asiasanat: educational attainment; multiorgan syndrome; neurofibromatosis 1; rare disease; school performance

Liittyvät organisaatiot

OKM-raportointi: Kyllä

Raportointivuosi: 2021

JUFO-taso: 1