Acceptability and Barriers of Exercise in Children With Osteogenesis Imperfecta.

Objective: To define barriers to participation in exercise in pediatric osteogenesis imperfecta (OI) and to gauge the acceptance of an exercise intervention in pediatric OI. Design: A quality improvement study involving the distribution of a custom-made questionnaire assessing exercise habits, perceived barriers to exercise, and acceptability of an exercise intervention as a potential treatment for improvement of muscle-bone outcomes. Setting: Performed at a tertiary pediatric center in Scotland. Participants: Seventeen children (N=17) with OI attending the pediatric bone service between June and September 2019 were included in the study. Because of the Coronavirus disease of 2019 (COVID-19) pandemic, this could not be continued further. No children were excluded. The median age of the population was 12.5 years (range, 3.6-17.7). Interventions: Not applicable. Main Outcome Measures: To gauge the acceptability of an exercise intervention in children with OI by assessing exercise behaviors and attitudes. Results: Out of the respondents, 11 of 17 were fully ambulant, 1 of 17 was ambulant with an aid, 3 of 17 were occasional wheelchair users, and 2 of 17 were full-time wheelchair users. Mostly, 16 of 17, were receiving bisphosphonate therapy, either orally or intravenously, while 5 of 17 used pain-relieving medication at least weekly. Additionally, 16 of 17 reported that having OI made exercise participation more challenging because of joint pain (69%), muscle weakness (50%), tiredness/fatigue (75%), and concern about fractures (75%). All children surveyed participated in sports outside of school, at least once a week, and 15 of 17 stated they would participate in at least 1 additional 30 minutes of exercise per week, with swimming being the most common (71%). Conclusions: Despite barriers to participation in exercise in OI, most children surveyed would wish to participate in an exercise intervention to improve muscle-bone.