Parekh Amruta D, Trusler Lisa A, Pietsch Joshua B, Byrne Daniel W, DeMarco Romano T, Pope John C, Adams Mark C, Deshpande Jayant K, Brock John W
General Clinical Research Center, Vanderbilt Children's Hospital, 2200 Children's Way, Nashville, TN 37232, USA.
J Urol. 2006 Oct;176(4 Pt 2):1878-82. doi: 10.1016/S0022-5347(06)00620-3.
Spina bifida, the most frequent permanently debilitating birth defect, results in major urological problems of voluntary bladder control and bowel function, which may impair quality of life. We prospectively assessed quality of life in patients with spina bifida using child and parent reports simultaneously. This study had 3 goals, that is to 1) document baseline health related quality of life in patients with spina bifida preoperatively, 2) study health related quality of life, reporting differences between parents and children, and 3) study changes in health related quality of life prospectively at preoperative and postoperative intervals.
Patients with spina bifida who were 2 to 18 years old and required reconstructive urological surgery in 2004 were included in the study. Demographic survey and the validated PedsQL 4.0 health related quality of life questionnaire were used preoperatively and postoperatively. A clinical outcomes data set was completed after the clinician saw the patient. PedsQL 4.0 subscales were scored using the algorithms provided.
The response rate was 100%. Mean participant age was 10.3 years. Preoperatively child physical and psychosocial health and school functioning were significantly higher than parent reports (p <0.001). Overall health related quality of life in patients with spina bifida was lower than in healthy children (62.4 vs 85, p <0.001). Six weeks postoperatively significant differences in health related quality of life reporting between parents and children had lowered. Six months postoperatively child emotional and social functioning scores were higher than parent scores (p <0.001). No correlation was found between health related quality of life, and clinical and demographic factors due to insufficient sample size.
Children with spina bifida recorded higher health related quality of life scores than parents/guardians. This health related quality of life study addresses concerns that impact daily quality of life in patients with spina bifida. Future health related quality of life studies in patients with spina bifida should use child self-reports.
脊柱裂是最常见的导致永久性残疾的出生缺陷，会引发自主膀胱控制和肠道功能方面的主要泌尿系统问题，这可能会损害生活质量。我们同时使用儿童和家长报告对脊柱裂患者的生活质量进行了前瞻性评估。本研究有3个目标，即1）记录脊柱裂患者术前与健康相关的生活质量基线，2）研究与健康相关的生活质量，报告家长和儿童之间的差异，3）前瞻性研究术前和术后不同时间段与健康相关的生活质量变化。
纳入2004年年龄在2至18岁且需要进行泌尿外科重建手术的脊柱裂患者。术前和术后使用人口统计学调查问卷以及经过验证的儿童生活质量量表4.0（PedsQL 4.0）与健康相关的生活质量问卷。临床医生看过患者后完成临床结局数据集。使用提供的算法对PedsQL 4.0分量表进行评分。
应答率为100%。参与者的平均年龄为10.3岁。术前儿童的身体和心理社会健康以及学校功能显著高于家长报告（p<0.001）。脊柱裂患者总体与健康相关的生活质量低于健康儿童（62.4对85，p<0.001）。术后六周，家长和儿童在与健康相关的生活质量报告方面的显著差异有所降低。术后六个月，儿童的情绪和社会功能得分高于家长得分（p<0.001）。由于样本量不足，未发现与健康相关的生活质量与临床和人口统计学因素之间存在相关性。
脊柱裂患儿记录的与健康相关的生活质量得分高于家长/监护人。这项与健康相关的生活质量研究解决了影响脊柱裂患者日常生活质量的问题。未来针对脊柱裂患者的与健康相关的生活质量研究应采用儿童自我报告。
