Trail M, Nelson N, Van J N, Appel S H, Lai E C
Department of Physical Therapy and Occupational Therapy, Methodist Hospital, Houston, TX, USA.
Arch Phys Med Rehabil. 2001 Jan;82(1):98-102. doi: 10.1053/apmr.2001.18062.
To determine wheelchair types and features that are most beneficial to patients with amyotrophic lateral sclerosis (ALS), to ascertain at what stage of disease and disability patients benefit from wheelchair use, and to pinpoint the differences in patient characteristics between the users of manual and motorized wheelchairs.
Internally generated questionnaire.
A neuromuscular clinic.
Forty-two patients (28 men, 14 women) with ALS who used wheelchairs and whose mean age was 53.9 years (range, 32-75yr).
Wheelchair users completed a 39-item survey.
At the time of the survey, the patients' mean Appel ALS rating scale total score was 84.5 (range, 48-138), indicating moderate disability. Forty-one patients reported that wheelchairs permitted them greater interaction in their communities; 33 were "very satisfied" with the positive impact of wheelchair use on their activity levels. Most users did not work and needed caregiver assistance for activities of daily living. The most desirable wheelchair features provide extra comfort (supports for the head, neck, trunk, extremities) and have improved maneuverability (lightweight frame, smaller wheelbase). Undesirable features are low sling backs and sling seats, nonremovable static leg rests, and large frames. No significant differences were reported between manual wheelchair users and motorized wheelchair users in terms of overall disease symptom severity, arm and leg strength, and bulbar function. However, motorized wheelchairs offer patients a greater sense of independence and an improved sense of well-being.
Information obtained directly from wheelchair users with ALS provided first-hand experience concerning the most and least desirable features of wheelchairs and may help other ALS patients make informed decisions when purchasing a wheelchair.
确定对肌萎缩侧索硬化症（ALS）患者最有益的轮椅类型和特征，确定患者在疾病和残疾的哪个阶段能从使用轮椅中获益，并找出手动轮椅使用者和电动轮椅使用者在患者特征方面的差异。
内部生成的问卷。
一家神经肌肉诊所。
42例使用轮椅的ALS患者（28例男性，14例女性），平均年龄53.9岁（范围32 - 75岁）。
轮椅使用者完成了一项包含39个项目的调查。
在调查时，患者的平均阿佩尔ALS评定量表总分是84.5（范围48 - 138），表明为中度残疾。41例患者报告轮椅使他们在社区中有更多互动；33例对轮椅使用对其活动水平的积极影响“非常满意”。大多数使用者没有工作，日常生活活动需要照料者协助。最理想的轮椅特征是提供额外的舒适感（头部、颈部、躯干、四肢支撑）以及提高机动性（轻质框架、较小轴距）。不理想的特征是低悬靠背和悬式座椅、不可拆卸的固定腿托以及大框架。在总体疾病症状严重程度、手臂和腿部力量以及延髓功能方面，手动轮椅使用者和电动轮椅使用者之间未报告有显著差异。然而，电动轮椅为患者提供了更大的独立感和更好的幸福感。
直接从患有ALS的轮椅使用者那里获得的信息提供了关于轮椅最理想和最不理想特征的第一手经验，可能有助于其他ALS患者在购买轮椅时做出明智的决定。
