Neuromuscular Diseases
Conditions
Keywords
Neuromuscular disease, Postural wheelchair disorders, Wheelchair positioning, Pain
Brief summary
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
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.
Interventions
OTHERCohorte
Assessment of postural wheelchair disorders, as well as PW pain, and pressure ulcers associated with sitting
Sponsors
Association Française contre les Myopathies (AFM), Paris
Groupement Hospitalier Intercommunal du Vexin
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
8 Years to No maximum
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Description of postural wheelchair disorders in the neuromuscular disease population | At the beginning and the end of the study, an average of 6 months | 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) |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Comparison of pain associated with using the wheelchair | At the beginning and the end of the study (before positioning equipment and few months after use), an average of 6 months | 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) |
| Assessment of the incidence of pressure ulcers associated with sitting in NMD | At the beginning and the end of the study (before positioning equipment and few months after use), an average of 6 months | Observation of the topography and the stage of ulcers associated with sitting |
| Assessment of the proportion of technical postural aids prescribed for patients who accept the positioning equipment | At the end of the study, an average of 6 months | Counts of the numbers of technical postural aids prescribed during consultation |
| Assessment of the technical postural aids efficacy | At the beginning and the end of the study (before positioning equipment and few months after use), an average of 6 months | 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) |
Countries
France
Contacts
Primary ContactMaryline Delattre
Backup ContactAudrey Gilibert
Outcome results
None listed