Disease related stress in children with Neurofibromatosis type 1 in Germany from their own and their parents´ perspective

Introduction and Objectives: Neurofibromatosis type 1 (NF1) is a rare disease characterized by benign tumors of the peripheral nerves and typical skin disfigurements. There is evidence that children with NF1 experience psychosocial problems (Noll 2007). The aim of this study: obtaining data about NF1 children´s stress from their own and their parents´ perspective. Materials and Methods: In a cross sectional study, a total of 109 children with NF1 and one parent of each child separately filled in a questionnaire on the child´s clinical status, quality of life (QoL), disease related stress, body image, support opt…