Participation and quality of life in children and adolescents with congenital limb deficiencies

Abstract

Objective: This study describes the participation and health-related quality of live (HRQoL) in Dutch children and adolescents with congenital lower limb deficiencies (LLD), and compares the results with the participation and the HRQoL of the general Dutch population. Differences between parent and self reports were explored. Design: Cross-sectional study Methods: This study assessed participation with the Children’s Assessment of Participation and Enjoyment (CAPE) and HRQoL using KIDSCREEN-52 questionnaires through self reports and parent proxy reports of 64 children and adolescents with congenital LLD aged 8-18 years. Dutch reference data from a representative national sample were used. Results: Findings indicate a broad range of diversity and intensity of participation as reported by children and adolescents with LLD and their parents. Significant differences in diversity and intensity of skill based and social activities were found in adolescents with LLD in comparison with the reference group. Parents reported lower intensity of physical and self improvement activities in their children aged 12-18 years in comparison with the children’s self report. HRQoL as reported by the children and adolescents with LLD and their parents was comparable with the Dutch reference group. Significant differences in comparing parent and self reported HRQoL were found in the domains “physical well being” (p=0.045), “moods and emotions” (p=0.006) and “self perception” (p=0.001). Conclusion: Dutch children and adolescents with LLD participate in diverse activities and perceive their HRQoL similar to their healthy peers. Parents’ perception of the participation and HRQoL is largely in accordance with the perception of their children.