ECTS2013 Poster Presentations Paediatric bone disease (7 abstracts)
1Karolinska Institute, Stockholm, Sweden; 2Astrid Lindgrens Childrens Hospital, Karolinska University Hospital, Stockholm, Sweden.
Introduction: Osteogenesis imperfecta (OI) is a genetic disorder which mainly affects the collagen in the bone mass with fractures and deformities as the main symptoms. In OI there is a great variation in dysfunction related to the disease. Mobility and activities related to mobility are often most difficult. The objective for this study was to find a relevant, valid and reliable instrument to assess the childrens activity capability.
Method and participants: A total of 58 children and adolescents from 7 to 18 years answered the Activities Scale for Kids capability, version 38 (ASK-c). ASK-c is a questionnaire with the highest score of 100. The participants were handed the questionnaire when seeing the Swedish OI team for a first or a follow-up visit. They were divided in to two groups: wheelchair users and nonwheelchair users. The data were statistically processed with Statistical Package for the Social Sciences (SPSS).
Results: The 58 participants had a mean age of 11.5 years; 39 were boys and 19 girls. Forty had OI type I, 10 had OI type III and 8 had OI type IV. 16 were wheelchair users and 42 did not use a wheelchair on a regular basis. The wheelchair users had a mean score of 64.5 and the nonusers had a score of 90.9. There was significant difference in how the two groups perceive their activity capability. The most difficult items for the children were activities related to sports, e.g. I think I could run…fast… and I think I could participate in team-sports. There was also a difference in how children with different OI types answered the questionnaire.
Conclusion: ASK is a valid instrument for self-report and appears to be useful in assessing activity capability in children and adolescents with OI.