The quality of life in girls with Rett syndrome

Nowadays, quality of life is receiving an\udincreasing attention in all scientific areas.\udRett syndrome (RTT) is a rare neurological\uddevelopment, affecting mainly females. The\udcongenital disease affects the central nervous\udsystem, and is one of the most common causes\udof severe intellectual disability. The aim of our\udstudy is to evaluate the effect of RTT on the\udquality of life of people who are affected. Both\udparents of 18 subjects, all female, diagnosed\udwith RTT, took part in the research. Quality of\udlife was assessed using the Italian version of\udthe Impact of Childhood Illness Scale. This\udscale consists of 30 questions that investigate\udthe effect of illness on children, parents and\udfamilies. For each question, the parent was\udasked to rate two variables: frequency and\udimportance. Another questionnaire was\udadministered to obtain medical history, diagnostic\udand therapeutic data of the persons with\udRTT. Our data show that RTT has a considerable\udimpact on both the child’s development\udand the entire family. Parents’ answers\uddemonstrated that their child’s illness had consequences\udfor the child and how the family\udcoped with it. For this reason, attention should\udbe directed at psychological and social aspects,\udas well as attitudes, manners, reactions and\udeffects such disturbances can have on the\udentire family