Article

PURPOSE: To describe clinical features, issues related to school life and
health-related quality of life (HRQOL) for children with congenital limb
deficiency (CLD) and compare these children to Norwegian school children on
HRQOL. METHOD: Cross-sectional study. In 2010, a postal questionnaire, designed
for this study and the Paediatric Quality of Life Inventory (PedsQL), was sent to
154 eligible parents of children with CLD, aged 6-18 years and registered at TRS
National Resource Centre for Rare Disorders in Norway. RESULTS: Response rate 44%
(n = 67), median age 11 years, 42% were girls. Of the total group, 46 had
unilateral upper limb deficiency (UULD) and 21 had multiple/lower limb deficiency
(MLD/LLD). The most common UULD was below-elbow deficiency, of these, 65% used
grip-improving devices, and 35% used prostheses. Children with UULD-reported
PedsQL score similar to Norwegian schoolchildren (NSC). The MLD/LLD group was
heterogeneous; most had below-elbow/knee deficiency. In this group, PedsQL scores
were reduced for physical and social functioning compared with NSC. Compared with
children with UULD, more children with MLD/LLD were restricted in participation
because of pain and fewer participated in physical education with peers.
CONCLUSIONS: Most children with CLD participated with their peers and managed
well in everyday life. Children with MLD/LLD seemed to have more challenges than
children with UULD. Approximately one-third of all the children had assistive
devices and/or practical assistance in school. Implications for Rehabilitation
Most children with upper-limb deficiency (UULD) in Norway manage well in everyday
life and have HRQOL equal to other Norwegian children. Many choose grip-improving
devices instead of prostheses. Their preferences should be respected and taken
into account as the need for new assistive devices arise. For children with
pronounced disabilities, access to, and use of, assistive devices, adaptions and
practical assistance may be important for participation. Cooperation with the
child and the parents is necessary to find useful measures. Physical education
and practical subjects may provide special challenges, both for children and
their teachers. Children themselves often find good solutions and the tasks
should be planned ahead in cooperation with them.

Langue : ANGLAIS