Association of a Child's Rare Disease Neurofibromatosis 1 with Parental Income and Employment Trajectories Following the Child's Birth.

PURPOSE: A sudden illness in family, such as cancer, is known to have significant economic effects, but the consequences of a child's genetic disease on parental income and employment have gained much less attention. This study examines the association of having a child with neurofibromatosis 1 (NF1) and parental income and employment.

METHODS

The Finnish cohort of 1,811 individuals with verified NF1 was cross-linked with income and employment data from Statistics Finland. The 772 parents of 390 children with sporadic NF1 and 446 parents of 229 children with familial NF1 born in 1988-2019 were compared with 7,635 and 4,465 parents of 3,862 and 2,252 matched non-NF1 individuals, respectively.

RESULTS

Parents of children with NF1 experienced slower income growth and lower employment rate increases following the birth of a child compared to the parents in the comparison group. Specifically, the parents of children with NF1 had a 14-23% lower income increase and 1-3 percentage points lower rise in employment rates compared to the comparators' parents after the child's birth.

CONCLUSIONS

The effects of a child's NF1 are gradual rather than immediate, reflecting both pre-existing labour market disparities and age-related income trends.