Wheelchair Positioning and Neuromuscular Diseases Database (Retrospective and Prospective)
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 发起方
- 入组人数
- 50
- 试验地点
- 2
- 主要终点
- Description of postural wheelchair disorders in the neuromuscular disease population
研究概览
简要总结
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).
详细描述
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.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 年龄范围
- 8 Years 至 —（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- 未提供
排除标准
- 未提供
结局指标
主要结局
Description of postural wheelchair disorders in the neuromuscular disease population
时间窗: 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)
次要结局
- 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 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)
- 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)
- 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)