Impact of Neurofibromatosis type 1 on families

Abstract

Objective: The study investigates the impact of Neurofibromatosis type 1 on the families, specially focusing on the socio- demographic factors such as age & gender of NF1 children, total number of children in the household, monthly income, employment status & marital status of parents on the Total family Stress, Distress Scale, Health related quality of life & Coping strategies.

Method: In this cross sectional study design, the research instruments such as Impact on Family Scale (FABEL), SF 12, Distress Thermometer, & CODI were used. Questionnaires were answered by the heterogeneous sample of 66 parents of NF1 children.