El presente trabajo nos acerca a conocer cuál es la perspectiva de los niños, adolescentes con discapacidad y sus familias en relación a la evaluación de uno de los Programas de un Centro de Rehabilitación Infantil en nuestros país.
Se basa en el estudio de la Calidad de Vida Relacionada con la Salud de los usuarios y sus familias, antes del ingreso al Programa y a los seis meses posteriores al tratamiento.
Purpose: The aim of the study was to evaluate the Assessment and Orientation Treatment Program for children and adolescents with disabilities treated at the Center Teletón Uruguay from the perspective of the patients and their parents based on several patient reported outcome measures: health related quality of life (HRQOL), treatment satisfaction, family impact, and emotional distress.
Methods: The sample consisted of all the 126 dyads of children/adolescents with ages ranging from 2 to 18 years and their primary caregivers who entered the program from April to October 2012. A set of instruments were filled out by children and parents before and six months after the program. T test for paired samples for continuous variables and McNemar’s test for categorical variables were used to assess changes pre and post intervention.
Results: There was a high prevalence of depression and anxiety in the caregivers. In the second evaluation, improvements that were statistically significant only for the caregivers were observed in the HRQOL of children, adolescents and caregivers.
Conclusions: The patient reported outcome measures used were effective in detecting changes in several areas of the quality of life of children observed by their caregivers and in their own quality of life after the intervention.
Keywords: Children with disabilities; family caregivers; quality of life; rehabilitation outcome.