Duchenne Muscular Dystrophy
Conditions
Keywords
Duchenne Muscular Dystrophy, telerehabilitation, satisfaction
Brief summary
Duchenne Muscular Dystrophy (DMD) is a progressive inherited disease that affects the muscles and causes functional limitations to varying degrees. It is vital to start physiotherapy follow-ups immediately after diagnosis. Patients with DMD are among the most vulnerable groups who have problems in accessing physiotherapy services during the COVID-19 pandemic. The aim of the study was to investigate the effects of the telerehabilitation program developed to protect the physical health of patients with DMD and not to interrupt their follow-up.
Detailed description
Forty two patients with DMD were included in the study. 30 of them were ambulant in group 1, and 12 were non-ambulant in group 2. Physiotherapy assessments were performed blindly before the program started. According to the functional levels of the individuals, 2 groups were formed. 9 physiotherapists applied the tele-rehabilitation program for 24 session (3 days in a week).
Interventions
OTHERTelerehabilitation
The 8 week exercise program with telerehabilitation
Sponsors
Karadeniz Technical University
Study design
Allocation
NON_RANDOMIZED
Intervention model
PARALLEL
Primary purpose
PREVENTION
Masking
NONE
Intervention model description
Grup 1: Ambulant Group Grup 2: Non-ambulant Group
Eligibility
Sex/Gender
MALE
Age
5 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
* Able to communicate verbally and visually * Older than 5 years old
Exclusion criteria
* The children who had undergone any surgical operations in the past 6 months, * Having a severe cognitive and breathing impairment * Using mechanical ventilator continually or intermittent * Having a febrile infection
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Pulmonary Dysfunction Test (After intervention) | After the intervention, average two weeks. | Value when the patient counts audibly in a single expiration after maximum inspiratory effort |
| Functional level | Before the intervention, up to one month | Brooke Function Classification System |
| Socio-demographics | Before the intervention, up to one month | gender, body weight, height |
| Walking test (Before intervention) | Before the intervention, up to one month. | The distance of 10 m was determined in a suitable indoor environment. |
| Walking test (After intervention) | After the intervention, average two weeks. | The distance of 10 m was determined in a suitable indoor environment. |
| Time to stand up from the supine position (Before intervention) | Before the intervention, up to one month. | The time to stand up from the supine position was recorded. |
| Time to stand up from the supine position (After intervention) | After the intervention, average two weeks. | The time to stand up from the supine position was recorded. |
| Modified upper extremity performance test (Before intervention) | Before the intervention, up to one month. | Flexion the shoulder to 90 degrees, flexion the shoulder above 90 degrees (above eye level), abduction of the shoulder 90 degrees, abduction of the shoulder above 90 degrees, doing the same movements with weight, bringing the empty glass to the mouth in a sitting position, bringing the full glass to the mouth |
| Modified upper extremity performance test (After intervention) | After the intervention, average two weeks. | Flexion the shoulder to 90 degrees, flexion the shoulder above 90 degrees (above eye level), abduction of the shoulder 90 degrees, abduction of the shoulder above 90 degrees, doing the same movements with weight, bringing the empty glass to the mouth in a sitting position, bringing the full glass to the mouth |
| Endurance (Before intervention) | Before the intervention, up to one month. | The number of knee extensions and elbow flexions they can do in sitting position in 30 seconds |
| Endurance (After intervention) | After the intervention, average two weeks. | The number of knee extensions and elbow flexions they can do in sitting position in 30 seconds |
| Pulmonary Dysfunction Test (Before intervention) | Before the intervention, up to one month. | Value when the patient counts audibly in a single expiration after maximum inspiratory effort |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Patient Satisfaction Survey | After the intervention average two weeks | General satisfaction, internet/connection, physiotherapist's guidance, timing, level of knowledge, reassurance, comfort, knowledge/advice, level of satisfaction with information clarity |
Countries
Turkey (Türkiye)
Outcome results
None listed