Fowler W M, Abresch R T, Koch T R, Brewer M L, Bowden R K, Wanlass R L
PM&R, University of California, Davis 95616, USA.
Am J Phys Med Rehabil. 1997 Jan-Feb;76(1):26-37. doi: 10.1097/00002060-199701000-00006.
Consumer and rehabilitation provider factors that might limit employment opportunities for 154 individuals with six slowly progressive neuromuscular diseases (NMD) were investigated. The NMDs were spinal muscular atrophy (SMA), hereditary motor sensory neuropathy (HMSN), Becker's muscular dystrophy (BMD), facioscapulohumeral muscular dystrophy (FSHD), myotonic muscular dystrophy (MMD), and limb-girdle syndrome (LGS). Forty percent were employed in the competitive labor market at the time of the study, 50% had been employed in the past, and 10% had never been employed. The major consumer barrier to employment was education. Other important factors were type of occupation, intellectual capacity, psychosocial adjustment, and the belief by most individuals that their physical disability was the only or major barrier to obtaining a job. Psychological characteristics were associated with level of unemployment. However, physical impairment and disability were not associated with level of unemployment. There also were differences among the types of NMDs. Compared with the SMA, HMSN, BMD, and FSHD groups, the MMD and LGS groups had significantly higher levels of unemployment, lower educational levels, and fewer employed professional, management, and technical workers. Nonphysical impairment factors such as a low percentage of college graduates, impaired intellectual function in some individuals, and poor psychological adjustment were correlated with higher unemployment levels in the MMD group. Unemployment in the LGS group was correlated with a failure to complete high school. Major provider barriers to employment were the low level of referrals to Department of Rehabilitation by physicians and the low percentage of acceptance into the State Department of Rehabilitation. The low rate of acceptance was primarily attributable to the low number of referrals compounded by a lack of counselor experience with individuals with NMD. Both consumer and provider barriers may contribute to the lack of interest in obtaining a job.
对可能限制154名患有六种缓慢进展性神经肌肉疾病（NMD）患者就业机会的消费者和康复提供者因素进行了调查。这些神经肌肉疾病包括脊髓性肌萎缩症（SMA）、遗传性运动感觉神经病（HMSN）、贝克型肌营养不良症（BMD）、面肩肱型肌营养不良症（FSHD）、强直性肌营养不良症（MMD）和肢带综合征（LGS）。研究时，40%的患者在竞争性劳动力市场就业，50%的患者过去曾就业，10%的患者从未就业。就业的主要消费者障碍是教育程度。其他重要因素包括职业类型、智力水平、心理社会适应情况，以及大多数人认为身体残疾是获得工作的唯一或主要障碍。心理特征与失业水平相关。然而，身体损伤和残疾与失业水平无关。不同类型的神经肌肉疾病之间也存在差异。与脊髓性肌萎缩症、遗传性运动感觉神经病、贝克型肌营养不良症和面肩肱型肌营养不良症组相比，强直性肌营养不良症和肢带综合征组的失业水平显著更高、教育程度更低，从事专业、管理和技术工作的就业人员更少。非身体损伤因素，如大学毕业生比例低、部分个体智力功能受损以及心理适应不良，与强直性肌营养不良症组的高失业水平相关。肢带综合征组的失业与未完成高中学业有关。就业的主要提供者障碍是医生向康复部转诊的比例低，以及被州康复部接受的比例低。接受率低主要归因于转诊数量少，再加上咨询师缺乏对神经肌肉疾病患者的经验。消费者和提供者两方面的障碍都可能导致对求职缺乏兴趣。
