Rare diseases and intellectual disability: assessment of quality of life of children and adolescents

• Published in: Siglo cero Vol. 47; no. 3; pp. 7 - 27
• Main Authors: Erica GONZÁLEZ MARTÍN, Laura E. GÓMEZ SÁNCHEZ, M.ª Ángeles ALCEDO RODRÍGUEZ
• Format: Journal Article
• Language: Spanish
• Published: Universidad de Salamanca 01-02-2017
• Subjects: calidad de vida; discapacidad intelectual; enfermedades raras; evaluación
• ISSN: 0210-1696; 2530-0350
• DOI: 10.14201/scero2016473727

Antecedents. The main objective of this study was to evaluate the quality of life in children and young people with rare diseases and intellectual disability, as well as to determine the incidence of certain predictors (i. e., gender, age, level of intellectual disability, type of school, type of illness and autonomous community) in the criterion variable. Method. The KidsLife Scale was applied, a questionnaire based on the eight domain model of quality of life by Schalock and Verdugo. The sample comprised 103 participants with rare diseases and intellectual disability, aged between 3 and 21, who received supports in any organization providing educational, social, or health services. Results. The best scores were found in physical wellbeing, while the lowest were in social inclusion. The level of intellectual disability and support needs resulted in significant differences for the total score of the scale. Analyses by domains showed differences by gender, intellectual disability level, and type of schooling. Conclusions. The results argue for designing practices aimed to improve quality of life-related personal outcomes with regard to self-determination, inclusion, and interpersonal relationships.