Wheelchair Positioning and Neuromuscular Diseases
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: Cohorte.
- Who it may be relevant to
- Registry conditions: Neuromuscular Diseases. Basic parameters: from 8 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- France
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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Official title
Wheelchair Positioning and Neuromuscular Diseases Database (Retrospective and Prospective)
Overview
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
- Other Cohorte
Assessment of postural wheelchair disorders, as well as PW pain, and pressure ulcers associated with sitting
Primary outcome measures
- Description of postural wheelchair disorders in the neuromuscular disease population [Time frame: At the beginning and the end of the study, an average of 6 months]
Secondary outcome measures (4)
- Comparison of pain associated with using the wheelchair [Time frame: 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 [Time frame: 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 [Time frame: At the end of the study, an average of 6 months]
- Assessment of the technical postural aids efficacy [Time frame: At the beginning and the end of the study (before positioning equipment and few months after use), an average of 6 months]
Eligibility criteria
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
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Study design
- Observational model
- Cohort
Study locations
France · 2 centers
- Groupement Hospitalier Intercommunal du Vexin / Site d'Aincourt - Pôle Soins de Suite et d — Aincourt
- Clinique du Positionnement de l'AFM — Évry
Identifiers
NCT: NCT05006859 · GHIV0321