McLimont Susan C, Owen Janice L, Wright James G
J Child Orthop. 2010 Jun;4(3):253-8. doi: 10.1007/s11832-010-0248-8. Epub 2010 Mar 11.
The outcomes movement has emphasized the importance of the patient in evaluating treatment outcome. However, concern has been raised about the ability of children, particularly those with multisystem disease, to evaluate their disability.
To determine whether children with spina bifida and muscular dystrophy and their parents agree when asked about the relative difficulty of daily activities and the severity of symptoms experienced by the child.
First, a list of symptoms and activity restrictions was generated from the literature, clinicians, and interviews with families with spina bifida and muscular dystrophy. Second, another group of parents and children with spina bifida (with hip dislocation or scoliosis) and with muscular dystrophy (with scoliosis), including those before and after surgery, independently rated the severity and importance of their objective and subjective complaints.
The correlation between parents and their children was high for both objective (median Spearman's = 0.70; standard deviation [SD] = ±0.17; range = -0.05-1.00) and subjective (median Spearman's = 0.76; SD = ±0.14; range = 0.13-1.00) complaints, with an overall excellent level of agreement (Kappa = 0.75; 95% confidence interval [CI]: 0.73, 0.76).
Children with spina bifida and muscular dystrophy are capable of understanding and assessing their disability.
结果运动强调了患者在评估治疗结果中的重要性。然而，人们对儿童，尤其是患有多系统疾病的儿童评估自身残疾状况的能力提出了担忧。
确定患有脊柱裂和肌肉萎缩症的儿童及其父母在被问及日常活动的相对难度和儿童所经历症状的严重程度时是否意见一致。
首先，从文献、临床医生以及对患有脊柱裂和肌肉萎缩症家庭的访谈中生成一份症状和活动限制清单。其次，另一组患有脊柱裂（伴有髋关节脱位或脊柱侧弯）和肌肉萎缩症（伴有脊柱侧弯）的父母和儿童，包括手术前后的患者，独立对他们客观和主观症状的严重程度及重要性进行评分。
父母与孩子之间在客观症状（中位数斯皮尔曼相关系数 = 0.70；标准差[SD] = ±0.17；范围 = -0.05 - 1.00）和主观症状（中位数斯皮尔曼相关系数 = 0.76；SD = ±0.14；范围 = 0.13 - 1.00）方面的相关性都很高，总体一致性水平极佳（卡帕值 = 0.75；95%置信区间[CI]：0.73，0.76）。
患有脊柱裂和肌肉萎缩症的儿童有能力理解和评估自身的残疾状况。
