Implementing Telehealth Support to Increase Physical Activity in Girls and Women With Rett Syndrome
Overview
- Phase
- N/A
- Intervention
- Not specified
- Conditions
- Rett Syndrome
- Sponsor
- Telethon Kids Institute
- Enrollment
- 60
- Locations
- 2
- Primary Endpoint
- Average daily uptime (%)
- Last Updated
- 6 years ago
Overview
Brief Summary
This study will recruit families with a daughter with Rett syndrome living in either Australia, Denmark or Israel, and thereafter deliver individually designed participation programs using telehealth strategies. We will evaluate the effectiveness of the programs on reducing sedentary behaviours, increasing physical activity and increasing quality of life.
Detailed Description
This project will implement two intertwined strategies that will build the capacity of the carer, clinical and therapy communities to support physical activity in Rett syndrome. Individuals with Rett syndrome experience difficulties with movement and this can make it difficult to participate in regular physical activity. Individuals with Rett syndrome need support to participate in physical activities and it is important to work with primary caregivers when developing strategies to support physical activity. We will conduct a clinical trial that tests the effectiveness of working with primary caregivers to develop strategies suitable to their lives that aim to increase participation in physical activity in the individual with Rett syndrome whom they support. We will use a clinical trial design and work with primary caregivers using Telehealth. We will test whether this approach decreases sedentary time and increases physical activity. We will also test if there are changes in the sleep, behaviour and quality of life. We aim to recruit 60 families for this study, 26 of whom will live in Australia. Data from the three sites will be pooled for a stronger analysis. We acknowledge that physical activity can be associated with a fall and therefore our program will be developed with the primary caregiver to be suitable for their lives and capacity to provide support. However, by practicing more activity, the individuals with Rett syndrome could be stronger and risks of falling could be reduced. The risks for the individual with Rett syndrome are therefore low. To let the Rett syndrome community know our results, we will then develop an online resource documenting the physical activity program and the evidence available to support it, and this will be freely available to families, carers and therapists wherever they live in the world.
Investigators
Eligibility Criteria
Inclusion Criteria
- •Genetically confirmed Rett syndrome
- •Able to stand (with or without assistance)
- •Live in Australia, Denmark or Israel
Exclusion Criteria
- •Individuals who have had spinal fusion over the previous 12 months
- •Individuals who have had lower extremity orthopaedic surgery over the previous 6 months
Outcomes
Primary Outcomes
Average daily uptime (%)
Time Frame: Average over 4 days, data capture at baseline, after 12 weeks and after 24 weeks
Percentage of time spent active (uptime) over total awake time, measured with an ActivPAL
Average daily step count
Time Frame: Average over 4 days, data capture at baseline, after 12 weeks and after 24 weeks
Number of daily steps measured by Stepwatch Activity Monitor
Secondary Outcomes
- Sleep quality(Parent caregiver recall over previous month, data capture at baseline, after 12 weeks and after 24 weeks)
- Behaviour(Parent caregiver recall over previous month, data capture at baseline, after 12 weeks and after 24 weeks)
- Child Quality of Life(Parent caregiver recall over previous month, data capture at baseline, after 12 weeks and after 24 weeks)