Physical, Cognitive, and Psychosocial Predictors of Functional Disability and Health-Related Quality of Life in Adolescents with Neurofibromatosis-1

Abstract EN

Objective.

To examine physical, cognitive, and social-emotional predictors of quality of life (HRQOL) and functional disability (FD) in adolescents diagnosed with Neurofibromatosis-1.

Methods.

Participants were twenty-seven adolescents with a diagnosis of NF-1 who were recruited through an NF-1 specialty clinic at a large Midwestern children’s hospital.

Measurements of the adolescents’ cognitive functioning, pain, FD, HRQOL, and social and emotional functioning were obtained with corresponding parent measures.

Results.

Emotional functioning significantly predicted youth-reported and parent-reported HRQOL, whereas days of pain significantly predicted youth-reported FD.

Conclusions.

NF-1 is a complex disease.

Measurements of the overall impact of the disease tap into different aspects of the effects of NF-1 on daily life.

Global outcomes such as HRQOL appear to be influenced especially by emotional functioning, whereas outcomes such as FD appear to be influenced by the physical/organic aspects of NF-1.