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.