Arthrogryposis, Muscular Dystrophy, Spinal Muscular Atrophy
Conditions
Brief summary
This study is to evaluate how the Wilmington Robotic Exoskeleton (WREX) is working for children who are using the WREX, or have used it in the past. The survey consists of a set of questions a) performed online and b) performed over the phone.
Detailed description
The WREX (Wilmington Robotic EXoskeleton) is being used by many children with neuromuscular conditions such as arthrogryposis and muscular dystrophy. Nemours/A.I. duPont Hospital for Children alone has provided a WREX for about 80 children in the last 3 years. This is being done through the orthopedic and muscle clinics in the hospital. We would like to perform a retrospective study to see how well the children are doing with the WREX. We propose getting this feedback through a survey administered to families using the WREX. The survey will be performed in two parts. 1) A phone survey will use the Canadian Occupational Performance Measure (COPM). 2) an online survey with additional questions. The parents are asked to submit answers on behalf of the children if they are unable to.
Interventions
DEVICEWREX orthosis
Upper extremity exoskleton used to assist movement
Sponsors
Nemours Children's Clinic
Study design
Observational model
OTHER
Time perspective
RETROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
2 Years to 21 Years
Healthy volunteers
No
Inclusion criteria
* Neuromuscular disease * Use the Wilmington Robotic Exoskeleton
Exclusion criteria
* people who do not use the Wilmington Robotic Exoskeleton
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Canadian Occupational Performance Measure (COPM) | Surveys were conducted at a single timepoint for each subject. The surveys were administered over a 4-month period for all the subjects. | Performance score on The Canadian Occupational Performance Measure (COPM). The total score range is 1-10. A score of 1 indicates indicates poor performance and low satisfaction and 10 indicates good performance and high satisfaction. The numbers indicate scores on a scale. |
Participant flow
Participants by arm
| Arm | Count |
|---|---|
| WREX Orthosis Children who have used a WREX Orthosis
WREX orthosis: Upper extremity exoskeleton used to assist arm movement | 25 |
| Total | 25 |
Baseline characteristics
| Characteristic | WREX Orthosis | — |
|---|---|---|
| Age, Continuous | 8.72 years STANDARD_DEVIATION 1.38 | — |
| Race and Ethnicity Not Collected | — | — Participants |
| Region of Enrollment United States | 25 Participants | — |
| Sex: Female, Male Female | 9 Participants | — |
| Sex: Female, Male Male | 16 Participants | — |
Adverse events
| Event type | EG000 affected / at risk |
|---|---|
| deaths Total, all-cause mortality | 0 / 25 |
| other Total, other adverse events | 0 / 25 |
| serious Total, serious adverse events | 0 / 25 |
Outcome results
Primary
Canadian Occupational Performance Measure (COPM)
Performance score on The Canadian Occupational Performance Measure (COPM). The total score range is 1-10. A score of 1 indicates indicates poor performance and low satisfaction and 10 indicates good performance and high satisfaction. The numbers indicate scores on a scale.
Time frame: Surveys were conducted at a single timepoint for each subject. The surveys were administered over a 4-month period for all the subjects.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| WREX Orthosis | Canadian Occupational Performance Measure (COPM) | 7.09 score on a scale | Standard Deviation 2.15 |