Health-related quality of life in Swedish children and adolescents with limb reduction deficiency

Aim: To investigate health-related quality of life (HRQoL) in young persons with limb reduction deficiency (LRD). Methods: One hundred and forty children with LRD aged 8-16 answered the DISABKIDS questionnaire for children with chronic health conditions. Of their parents, 137 answered a corresponding questionnaire concerning their child. Results: Compared to reference data from children with other health conditions, children with LRD showed higher overall HRQoL and higher HRQoL in all subscales except social exclusion. Overall, the results were not related to gender or age, but girls with longitudinal, bilateral or lower LRD reported significantly lower HRQoL in most subscales than girls with other forms of LRD. Unexpected attention and perceived physical appearance had a significant impact on HRQoL. There was poor agreement between parent and child report of the child's HRQoL. Conclusion: Children and adolescents with limb reduction deficiency have a better HRQoL than children with other health conditions but there are subgroups of children who experience a significantly lower HRQoL than their peers. The difference between parent and child ratings should be considered in clinical practice.