Quality of life and wishes in Duchenne Muscular Dystrophy: the perception of children and their parents

Abstract

Objective: To assess the agreement between children with Duchenne Muscular Dystrophy (DMD) and their parents regarding the perception of quality of life (QOL) and the wishes expressed by children. Methods: The study involved 14 patients (median age = 9.9 yearsold) followed up in Sarah Rehabilitation Center – Fortaleza, Brazil and their parents. The following instruments were used: AUQEI questionnaire (Autoquestionnaire Qualité de Vie Enfant Imagé) and Three Wishes Projective Technique, this being analyzed by Nereo & Hinton’s system of categories (2003). Results: The analysis of AUQEI showed a good agreement with ICC (intraclass correlation coefficient) = 0,699 and a positive and significant correlation between scores of both children and their parents (rho = 0.54, p < 0.05). The Three Wishes also showed a good agreement, mainly in the categories of Material Goods and Activities. Conclusions: Despite children with DMD and their parents exhibited similar perceptions of the QOL and wishes, we suggest that both be heard in respect to aspects of the rehabilitation program. This study provides additional data concerning the need for child QOL assessment instruments that include parallel versions directed to the children and their parents.

Keywords

• Muscular Dystrophy
• Duchenne
• Quality of life
• wishes
• agreement