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Vol. 58. Issue 6.
Pages 550-555 (1 June 2003)
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Vol. 58. Issue 6.
Pages 550-555 (1 June 2003)
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Evaluación de la calidad de vida en niños y adolescentes portadores de enfermedades crónicas y/o incapacitadoras: un estudio brasileño
Quality of life evaluation in children and adolescents with chronic and/or incapacitating diseases: a brazilian study
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E. Kuczynski
Corresponding author
ekuczynski@uol.com.br

Correspondencia: Psiquiatria daInfância e daAdolescência.Instituto de Psiquiatria do Hospitaldas Clínicas. Faculdade de Medicina.Universidade de São Paulo (SEPIA-IPq-HC-FMUSP). R. Dr. Ovídio Pires de Campos, sem n.° CEP 05403-900.Cerqueira César. São Paulo.Brasil
, C.A.A. Silva, L.M. Cristófani, M.H.B. Kiss, V. Odone Filho, F.B. Assumpção Jr.
Servicio de Psiquiatría de la Infancia y de la Adolescencia. Instituto de Psiquiatría del Hospital de las Clínic sde la Facultad de Medicina de la Universidad de São Paulo (SEPIA-IPq-HC-FMUSP). Brasil.
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Objetivo

Evaluar la calidad de vida de niños y adolescentes portadores de leucemia linfocítica aguda (LLA) y artritis reumatoide juvenil (ARJ).

Material y métodos

Se aplicó la Children’s Global Assessment Scale (CGAS), la Vineland Adaptative Behavior Scale (VABS) y el Autoquestionnaire Qualité de Vie Enfant Imagé (AUQEI) en 28 portadores de LLA, 28 portadores de ARJ y 28 escolares sanos pareados, de 4 a 13 años incompletos y diagnóstico entre 1 y 5 años.

Resultados

Hubo discreta diferencia entre los grupos LLA y ARJ respecto a la edad. No hubo diferencias significativas en relación al tiempo de tratamiento, ni a la puntuación de la CGAS. Hubo diferencia significativa en la puntuación total de la VABS, así como del dominio comunicacional de la VABS. La diferencia ente los grupos ARJ y Sanos en relación a la puntuación de la VABS, dominio de actividades de vida cotidiana, no fue significativa. No hubo diferencia significativa entre los grupos respecto a la puntuación del dominio socialización de la VABS ni del AUQEI.

Conclusión

En nuestro estudio, es nítido el peor desempeño de los niños crónicamente enfermos en lo que se refiere al desarrollo de comportamientos adaptables. No obstante, refieren una calidad de vida compatible con los controles sanos. Urge que se desarrollen métodos de evaluación habilitados en captar la percepción de la enfermedad y del tratamiento proveniente del propio paciente pediátrico.

Palabrasclave:
Calidad devida
Niño
Adolescente
Enfermedadcrónica
Leucemia
Artritis reumatoidejuvenil
Psiquiatríainfantil
Objective

To evaluate quality of life in children and adolescents with acute lymphocytic leukemia (ALL) and juvenile rheumatoid arthritis (JRA).

Materialand methods

We administered the Children’s Global Assessment Scale (CGAS), the Vineland Adaptative Behavior Scale (VABS) and the Autoquestionnaire qualité de vie enfant imagé (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.

Keywords:
Quality oflife
Child
Adolescent
Chronicdisease
Leukemia
Juvenile rheumatoidarthritis
Childpsychiatry
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