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Delivering a Home-Based Exercise Program to Youth With Osteogenesis Imperfecta: Protocol for a Comparative-Approach
Georgia Powell1,2, Marianne Gagnon1,2, Svetlana Komarova2,3
1Department of Surgery, Division Surgical and Interventional Sciences, McGill University, Montreal, QC, Canada.
JMIR Research Protocols
|July 3, 2023
Summary
Telemedicine effectively delivers exercise interventions for youth with Osteogenesis Imperfecta (OI), improving muscle function. Supervised programs show higher adherence, while follow-up models offer better cost-effectiveness for this rare bone disorder.
Area of Science:
- Orthopedics
- Rehabilitation Medicine
- Telehealth
Background:
- Osteogenesis Imperfecta (OI) is a rare genetic disorder characterized by bone fragility and muscle weakness.
- Exercise interventions can improve muscle and bone strength in individuals with OI.
- Telemedicine offers a potential solution for delivering exercise programs to individuals with OI due to the disorder's rarity and limited access to specialists.
Purpose of the Study:
- To assess the feasibility and cost-effectiveness of two telemedicine approaches for delivering exercise interventions to youth with OI.
- To evaluate the impact of these telemedicine-delivered exercise interventions on muscle function and cardiopulmonary fitness in youth with OI.
Main Methods:
- A 12-week remote exercise intervention was provided to 12 youth (aged 12-16) with OI Type I.
- Participants were randomized into a supervised group (teleconference-monitored sessions) or a follow-up group (monthly progress updates).
- Feasibility was measured by recruitment, adherence, and completion rates; cost-effectiveness was analyzed; muscle function and cardiopulmonary fitness were assessed pre- and post-intervention.
Main Results:
- The supervised group is anticipated to demonstrate higher adherence and completion rates.
- Greater physiological benefits are expected in the supervised group.
- The follow-up approach is predicted to be more cost-effective than the supervised telemedicine model.
Conclusions:
- Telemedicine is a feasible method for delivering exercise interventions to youth with OI.
- This study provides a foundation for expanding access to specialized therapies for rare disease populations via telemedicine.
- Identifying the optimal telemedicine approach can enhance therapeutic accessibility for individuals with rare disorders.
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