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Psychosocial Features of Neurofibromatosis Type 1 in Children and Adolescents

Vincent Domon-Archambault1, Louise Gagnon2, Amélie Benoît2

  • 11 Centre Hospitalier Universitaire Sainte-Justine, Montreal, Quebec, Canada.

Journal of Child Neurology
|January 11, 2018
PubMed

Insights

Children with Neurofibromatosis type 1 (NF1) experience more social and mental health issues. More research is needed to develop and evaluate interventions for these psychosocial challenges in pediatric NF1 patients.

Area of Science:

  • Pediatric Neurology
  • Developmental Psychology
  • Genetics

Background:

  • Neurofibromatosis type 1 (NF1) is a common genetic disorder impacting children and adolescents.
  • NF1 is associated with diverse developmental deficits affecting psychosocial well-being.

Purpose of the Study:

  • To document the psychosocial features of NF1 in pediatric patients.
  • To identify and report existing interventions for psychosocial needs in NF1.

Main Methods:

  • A comprehensive literature review was performed.
  • Focused on social life, mental health, quality of life (QOL), and psychosocial interventions for pediatric NF1.

Main Results:

  • Pediatric NF1 patients face higher risks of social difficulties, mental health disorders, and behavioral/emotional problems.
  • NF1 is linked to a diminished quality of life compared to the general population.
  • Only three studies reported interventions specifically for the NF1 population.

Conclusions:

  • There is a significant need for the development and rigorous assessment of psychosocial interventions for NF1 patients.
  • Addressing the psychosocial needs of children and adolescents with NF1 is critical.

Keywords:
NF1QOLchildren and adolescentsmental healthneurofibromatosis type 1psychosocial

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