Process measures and patient parent evaluation of surgical management of spinal deformities in patients with progressive flaccid neuromuscular scoliosis (Duchenne's muscular dystrophy and spinal muscular atrophy)
Process measures and patient parent evaluation of surgical management of spinal deformities in patients with progressive flaccid neuromuscular scoliosis (Duchenne's muscular dystrophy and spinal muscular atrophy)
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DOI：
10.1097/00007632-199907010-00006
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发表时间：
1999-07-01
期刊：
影响因子：
3
通讯作者：
Blanke, K
中科院分区：
文献类型：
--
作者：
Bridwell, KH;Baldus, C;Blanke, K
研究设计.在1985年至1995年期间，对54例连续的弛缓性神经肌肉性脊柱侧凸患者（33例为杜氏肌营养不良症，21例为脊髓性肌萎缩症）进行了手术，并对他们的功能、自我形象、美观、疼痛、肺部状况、患者护理、生活质量和满意度进行了问卷调查。48名患者归还了避孕套。评估患者/家长的满意度以及脊柱融合术对这些患者是否有益的临床/功能方式，并评估并发症和最终的影像学结果。只有少数报告的结果，脊柱融合和节段性器械的松弛性神经肌肉疾病。目前还没有关于患者/父母对手术的评价的公开报道。调查问卷的结果进行了统计，分级，并分为八个类别。通过Cronbach α分析、重测和与特发性脊柱侧凸患者问卷答案的比较，对问卷进行了验证。影像学数据和并发症也积累。术后随访2 ~ 12.6年，平均7.8年。除了两名患者在手术后3个月内死亡外，所有患者似乎都从手术中受益。美容、生活质量和总体满意度评分最高。这些数据表明，采用节段性脊柱内固定的脊柱融合术使大多数杜氏肌营养不良症或脊髓性肌萎缩症伴脊柱畸形的患者在所有评估类别方面受益，即使这些疾病的病程逐渐恶化。
Study Design. Fifty-four consecutive patients with flaccid neuromuscular scoliosis (33 with Duchenne's muscular dystrophy, 21 with spinal muscular atrophy) who had undergone surgery for their disorder between 1985 and 1995 were sent questionnaires to evaluate function, self-image, cosmesis, pain, pulmonary status, patient care, quality of life, and satisfaction. Forty-eight patients returned the questionnaires.Objective. To assess patient/parent satisfaction and clinical/functional ways in which spinal fusion helped or did not benefit these patients and to assess complications and the ultimate radiographic result.Summary of Background Data. There are only a few reports of results of spinal fusion and segmental instrumentation for flaccid neuromuscular disorders. There are no published reports regarding patient/parent evaluation of the procedure.Methods. Results of the questionnaire were tallied, graded, and divided into eight categories. The questionnaire was validated by a Cronbach's alpha analysis, a test-retest, and a comparison with questionnaire answers from patients with idiopathic scoliosis. Radiographic data and complications also were accumulated. The follow-up periods after surgery ranged from 2 to 12.6 years (average, 7.8 years).Results. Except for two patients who died within 3 months of surgery, all patients seemed to have benefited from the surgery. Cosmesis, quality of life, and overall satisfaction rated the highest.Conclusion. These data indicate that spinal fusion with segmental spinal instrumentation benefits most patients with Duchenne's muscular dystrophy or spinal muscular atrophy with spinal deformities in terms of all categories assessed, even though these diseases have a progressively deteriorating course.