Quality of life evaluation in children and adolescents with chronic and/or incapacitating diseases:: A Brazilian study

Objective To evaluate quality of life in children and adolescents with acute lymphocytic leukemia (ALL) and juvenile rheumatoid arthritis (JRA). Material and methods We administered the Children's Global Assessment Scale (CGAS), the Vineland Adaptative Behavior Scale (VABS) and the Autoquestionnaire qualite de vie enfant image (AUQEI) to a sample of 28 children with All, 28 children with JRA, and 28 healthy controls, aged 4 to 13 years old, who were diagnosed between 1 and 5 years previously. Results Slight differences were found in age between patients with ALL and those with JRA. No significant differences were found in time since diagnosis or in CGAS scores. A significant difference was found in VABS global scores, as well as in VABS communication domain scores. No significant differences were found in VABS daily living skills domain scores between patients with ARJ and healthy controls. No significant differences were found among the groups in VABS socialization domain scores or in AUQEI scores. Conclusion In our study, chronically ill children clearly performed worse in adaptative behavior development. Nevertheless, their quality of life was similar to that of healthy controls. Appropriate methods to identify pediatric patients' perception of their illnesses and treatment should be urgently developed.