Wheelchair Positioning and Neuromuscular Diseases

Study Overview
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Brief Summary
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This database will describe sitting postural control in wheelchair, as well as PW pain, and pressure ulcers associated with sitting, in patients with neuromuscular disease (NMD).

Detailed Description
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Neuromuscular diseases are genetic diseases of the muscle or its innervation (nerve connection) causing respiratory, cardiac and especially motor difficulties which may require use of wheelchair. However there is no standardized positioning protocol, so it seems interesting to us to study wheelchair positioning in neuromuscular diseases). The purpose of this study is to describe sitting posture in the wheelchair in patients with neuromuscular disease, pain associated with using the wheelchair, but also to assess the effectiveness of the recommended equipment making the same evaluations in follow-up consultation (a few months after receipt of the prescribed TAP). Posture is assessed by the tool: Measurement of Postural Control in Seated Postural Control Measure for Adults 2.0 (SPCMA 2.0), which is a validated tool. Pain is assessed by a Simple Verbal Scale or by a Visual Analog Scale. This database could allow providing guidelines of good practice, for wheelchair positioning for patients with neuromuscular disease.

Official Title
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Wheelchair Positioning and Neuromuscular Diseases Database (Retrospective and Prospective)

Conditions
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Neuromuscular Diseases

Intervention / Treatment
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* Other: Cohorte


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria : Patient with neuromuscular disease Written informed consent (IC) obtained Adult patients (> 18 years) Or Adults under guardianship who has given theirs oral consent and guardian's consent obtained Or Childs who has given theirs oral consent and parents' consent obtained Wheelchair user Exclusion Criteria : • Patient not seen in positioning consultation by N. Pellegrini and / or E. Dupitierr

Ages Eligible for Study
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Minimum Age: 8 Years

Sexes Eligible for Study
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All

Study Plan
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How is the study designed?
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Arms and Interventions

| Intervention/Treatment |
| --- |
|Other: Cohorte|Assessment of postural wheelchair disorders, as well as PW pain, and pressure ulcers associated with sitting|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Description of postural wheelchair disorders in the neuromuscular disease population | Measurement of Posture by the tool: Measurement of Postural Control in Seated Postural Control Measure for Adults 2.0 (SPCMA 2.0) score (0 = normal, 1 = mild, 2 = moderated and 3 = severe) | At the beginning and the end of the study, an average of 6 months | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Comparison of pain associated with using the wheelchair | Assessment of initial pain (before positioning equipment) and pain after positioning equipment. Pain is assessed by a Simple Verbal Scale or by a Visual Analog Scale (0 to 10) (0 = no pain and 10 is the strongest pain) | At the beginning and the end of the study (before positioning equipment and few months after use), an average of 6 months | 
| Assessment of the incidence of pressure ulcers associated with sitting in NMD | Observation of the topography and the stage of ulcers associated with sitting | At the beginning and the end of the study (before positioning equipment and few months after use), an average of 6 months | 
| Assessment of the proportion of technical postural aids prescribed for patients who accept the positioning equipment | Counts of the numbers of technical postural aids prescribed during consultation | At the end of the study, an average of 6 months | 
| Assessment of the technical postural aids efficacy | Comparison of Postural Control in Seated Postural Control Measure for Adults 2.0 (SPCMA 2.0) score before and after using of technical postural aids (0 = normal, 1 = mild, 2 = moderated and 3 = severe) | At the beginning and the end of the study (before positioning equipment and few months after use), an average of 6 months | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Neuromuscular disease, Postural wheelchair disorders, Wheelchair positioning, Pain