The quality of life in girls with Rett syndrome

Lucia Parisi, Michele Roccella, Teresa Di Filippo

Risultato della ricerca: Articlepeer review

8 Citazioni (Scopus)

Abstract

Nowadays, quality of life is receiving anincreasing attention in all scientific areas.Rett syndrome (RTT) is a rare neurologicaldevelopment, affecting mainly females. Thecongenital disease affects the central nervoussystem, and is one of the most common causesof severe intellectual disability. The aim of ourstudy is to evaluate the effect of RTT on thequality of life of people who are affected. Bothparents of 18 subjects, all female, diagnosedwith RTT, took part in the research. Quality oflife was assessed using the Italian version ofthe Impact of Childhood Illness Scale. Thisscale consists of 30 questions that investigatethe effect of illness on children, parents andfamilies. For each question, the parent wasasked to rate two variables: frequency andimportance. Another questionnaire wasadministered to obtain medical history, diagnosticand therapeutic data of the persons withRTT. Our data show that RTT has a considerableimpact on both the child’s developmentand the entire family. Parents’ answersdemonstrated that their child’s illness had consequencesfor the child and how the familycoped with it. For this reason, attention shouldbe directed at psychological and social aspects,as well as attitudes, manners, reactions andeffects such disturbances can have on theentire family.
Lingua originaleEnglish
pagine (da-a)5-9
Numero di pagine5
RivistaMental Illness
Volume8
Stato di pubblicazionePublished - 2016

All Science Journal Classification (ASJC) codes

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