Wheelchair Positioning and Neuromuscular Diseases (BDD-POSIT-MNM)

Groupement Hospitalier Intercommunal du Vexin

Status: Enrolling

Conditions: Neuromuscular Diseases

Treatments: Other: Cohorte

Study type: Observational

Funder types: Other

Identifiers

NCT05006859

GHIV0321

Details and patient eligibility

About

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).

Full 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.

Enrollment: 50 estimated patients

Sex: All

Ages: 8+ years old

Volunteers: No Healthy Volunteers

Inclusion and exclusion 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