Developing and Validating a Score to Predict Changes Needed in Wheelchair Seating for Adults with Neuromuscular Diseases

What this Trial Is About

Researchers are investigating a prognostic score to predict when wheelchair users with neuromuscular diseases may need changes to their seating system. This study focuses on adults who use wheelchairs daily due to conditions like Duchenne muscular dystrophy or infantile spinal muscular atrophy type II. The goal is to guide healthcare professionals in deciding when a patient requires a reassessment of their seated posture to prevent complications such as pain, stiffness, and spinal deformities. Participants are divided into two groups a development cohort and a validation cohort across multiple centers. Each participant receives usual care, which includes at least two multidisciplinary consultations during annual visits. The study tracks changes in the wheelchair seating system over a 12-month period to evaluate the prognostic score. Throughout the study, participants will undergo assessments measuring seated postural control, pain levels, pressure ulcers, comfort, and postural stability at the beginning and end of the 12 months. Researchers will monitor adverse events during this time. The study aims to provide a reliable tool that healthcare providers can use to improve daily quality of life for wheelchair users by timely identifying the need for seating adjustments.

Elaboration of a Pronostic Score of Changes on Wheelchair's Seating System