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| Name | Class |
|---|---|
| Association Française contre les Myopathies (AFM), Paris | OTHER |
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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).
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.
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Cohorte | Other | Assessment of postural wheelchair disorders, as well as PW pain, and pressure ulcers associated with sitting |
|
| 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 |
| 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 |
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Inclusion Criteria :
Exclusion Criteria :
• Patient not seen in positioning consultation by N. Pellegrini and / or E. Dupitierr
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Patients with neuromuscular disease, using Wheelchair, seen in positioning consultation by N. Pellegrini and / or E. Dupitier
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Maryline Delattre | Contact | +331.30.75.41.31 | maryline.delattre@ght-novo.fr | |
| Audrey Gilibert | Contact | +331.30.75.40.40 | 72.57 | audrey.gilibert@ght-novo.fr |
| Name | Affiliation | Role |
|---|---|---|
| Nadine Pellegrini | Groupement Hospitalier Intercommunal du Vexin | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Groupement Hospitalier Intercommunal du Vexin / Site d'Aincourt - Pôle Soins de Suite et de Réadaptation spécialisés | Recruiting | Aincourt | 95510 | France |
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| ID | Term |
|---|---|
| D009468 | Neuromuscular Diseases |
| D010146 | Pain |
| ID | Term |
|---|---|
| D009422 | Nervous System Diseases |
| D009461 | Neurologic Manifestations |
| D012816 | Signs and Symptoms |
| D013568 | Pathological Conditions, Signs and Symptoms |
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| ID | Term |
|---|---|
| D011795 | Surveys and Questionnaires |
| ID | Term |
|---|---|
| D003625 | Data Collection |
| D004812 | Epidemiologic Methods |
| D008919 | Investigative Techniques |
| D017531 | Health Care Evaluation Mechanisms |
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| 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 |
| Clinique du Positionnement de l'AFM | Recruiting | Évry | 91 000 | France |
|
| D011787 | Quality of Health Care |
| D017530 | Health Care Quality, Access, and Evaluation |
| D011634 | Public Health |
| D004778 | Environment and Public Health |