The quality of life of children with pervasive developmental disorders.Minerva Pediatr. 2009 Aug; 61(4):361-70.MP
Quality of life is increasingly the focus of attention by health, psychological and social services. Pervasive developmental disorders (PDD) are a group of psychiatric conditions in which the patient's clinical case history is characterized by disturbances in social interaction, deterioration of verbal and non-verbal communication, and presence of bizarre, limited and stereotyped activity. These disturbances affect multiple developmental areas and show up in very early stages of development, resulting in a permanent disorder. Many studies have sought to recognize causes and interventions for persons with PDD, however, they often take insufficient account of the effects these disorder can have on the lifestyle of patients and their families. These clinical case histories are so pervasive that they cause a disorder which upsets the equilibrium of the person's entire life. The aim of this study was to assess the effect of living with PDD on the person's quality of life and to highlight the factors that impact on the person and his/her family.
Both parents of 54 subjects (46 males and 8 females; age range 4-28 years) with diagnosed PDD (43 with autistic disorder, 2 with childhood disintegrative disorder, 3 with Asperger Syndrome, 6 with pervasive development disorder NAS) were enrolled in the study. The subjects affected with PDD were recruited at the AGSAS Onlus and IsMeC. Diagnosis was based on the criteria of the Diagnostic and Statistical Manual of Mental Disorders. Quality of life was assessed using the Italian version of the Impact of Childhood Illness Scale (Hoare and Russell, 1995). This scale consists of 30 questions that investigate the effect of illness on children, parents and families. For each question, the parent was asked to rate two variables: frequency and importance. Another questionnaire was administered to obtain medical history, diagnostic and therapeutic data of the persons with PDD.
Analysis of frequencies and percentages of questionnaire answers showed that the most important problems related to illness; specifically, according to the Frequency and Importance Parameters, the problems centered around self-care skills, difficulty in explaining the child's illness to others and looking after the child. The most important problems about the other children in the family concerned providing them with necessary attention and the restrictions their brother/sister's illness placed on their own activities. No significant correlations emerged between diagnosis type and answers on individual subscale items (Pearson's r).
Our data show that PDD has a considerable impact on both the child's development and the entire family. Parents' answers demonstrated that their child's illness had consequences for the child and how the family coped with it. For this reason, attention should be directed at psychological and social aspects, as well as attitudes, manners, reactions and effects such disturbances can have on the entire family.