Facioscapulohumeral muscular dystrophy type 1
Conditions
Interventions
Balanced shoulder therapy consists of 6 sessions of pediatric physiotherapy for
training scapula-coordinating function and 4 sessions of pediatric occupational
therapy for education of child and par
Sponsors
Radboud Universitair Medisch Centrum
Eligibility
Age
2 Years to 64 Years
Inclusion criteria
Inclusion criteria: - Children with clinically or genetically confirmed FSHD type 1 aged 8-21 years. - Children attending normal regular education. - Children with scapular dyskinesia (VASK score >=20).
Exclusion criteria
Exclusion criteria: - Other neurological disorder or neuromuscular disorder affecting shoulder function. - Orthopedic condition that affects shoulder function. - Children who have had this type of therapy before in the past 2 years. - Children who are not motivated or able to perform this therapy. - Children who are non-ambulatory.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The Pediatric/Adolescent Shoulder Survey (PASS). A patient reported outcome measure (PROM) with 13 questions on symptoms, impairments, compensatory strategies and emotional stress related to shoulder dysfunction (10 minutes). - Canadian Occupational Performance Measure (COPM). The COPM is administered by the occupational therapist and identifies the main problems experienced by the child and measures changes in the child's perception of his actions and his satisfaction with the change during the treatment process (30 minutes). | — |
Secondary
| Measure | Time frame |
|---|---|
| Qualitative study: - Experiences of children, parents and therapists, from which themes are determined. The experience concerns the content of therapy, the individual elements of therapy, the perceived effect, the balance between putting energy into it and what it yields. There is also room to share unexpected experiences. ...................................................... Functional level: Muscle strength of upper extremity: - Hand Held Dyanometry (HHD (Microfet)) Duration: 10 minutes. Scapular kinesia: - Visual analysis of scapular kinesia (VASK) by means of a film recording on a normal camera of a cell phone in which there is analysis of the scapula in static and dynamic position Duration: 1 minute. Activity Level Active Range of Motion within activities: Reachable Work Space (RWS). Duration: 10 minutes. Degree of upper extremity complaints and limitations during activities: - Quick Disabilities of the Arm, Shoulder and Hand (Quick DASH), including module on sports and playing musical instruments. Duration: 10 minutes. - 4 Items of upper extremity (Overarm throwing, Underarm throwing, Chest pass, Lifting a box) of the Functional Strength Measurement (FSM) with Numeric Rating Scale (NRS) of pain and fatigue of upper extremity Duration: 10 minutes. | — |
Countries
Netherlands
Contacts
Public ContactM. Pelsma
Radboud Universitair Medisch Centrum
Outcome results
None listed