Participation and health-related quality of life of Dutch children and adolescents with congenital lower limb deficiencies.

OBJECTIVES To describe participation and health-related quality of life of Dutch children and adolescents with congenital lower limb deficiencies in comparison with typically developing children, and to explore differences between various degrees of limb loss and between parental reports and self-reports on health-related quality of life. DESIGN Cross-sectional study. METHODS Participation was assessed with the Children's Assessment of Participation and Enjoyment questionnaire, and health-related quality of life with the KIDSCREEN-52 questionnaire, both as parental reports and self-reports, for 56 children and adolescents with congenital lower limb deficiencies, aged 8-18 years. RESULTS Participation and health-related quality of life of children and adolescents with lower limb deficiencies (age range 8-18 years) did not differ from those of the reference group, except that the adolescents with lower limb deficiencies (age range 12-18 years) reported significantly (p < 0.05) less diversity and lower intensity of social and skill-based activities. Degree of limb loss did not affect participation or health-related quality of life. Differences (p < 0.05) between parental reports and self-reports for health-related quality of life were found for the "physical well-being", "moods and emotions" and "self-perception" domains. While parental reports were comparable to the adolescents' self-ratings, parents reported lower health-related quality of life in the "moods and emotions", "self-perception" and "autonomy" domains for their younger children. CONCLUSION While the participation and perceived health-related quality of life of Dutch children with lower limb deficiencies do not differ from those among typically developing children, the participation of adolescents with lower limb deficiencies is characterized by less diversity, with less interaction in social and skill-based activities.