Department of Urology, Johns Hopkins Medical Institutions, Marburg144, 600 North Wolfe St., Baltimore, Maryland 21287-2101, USA.
J Urol. 2010 Oct;184(4 Suppl):1656-61. doi: 10.1016/j.juro.2010.03.122. Epub 2010 Aug 21.
Few groups have examined health related quality of life for adolescents with bladder exstrophy-epispadias. We studied parent reported health related quality of life for adolescents with bladder exstrophy-epispadias using the Child Health Questionnaire-Parent Form 50.
We recruited 11 to 17-year-old participants with bladder exstrophy-epispadias and their parents. Parents served as proxy respondents for the adolescents by self-administering a validated generic health related quality of life instrument, the Child Health Questionnaire-Parent Form 50. We collected urinary incontinence, catheterization status, and medical and surgical history data. Mean questionnaire scores were compared to population based norms.
Median age of the 55 patients was 14 years, 69% were male and 84% were white. Diagnoses included bladder exstrophy in 48 cases and epispadias in 7. Of the participants 29 (53%) reported urinary incontinence. The median number of lifetime surgeries was 9. Although physical and psychosocial summary measure scores were comparable to norms, the mean general health perception score was significantly worse than that of a population based sample (65.8 points, 95% CI 61.4-70.2 vs 73, 95% CI 71.3-74.7, p = 0.004). Mean family activity and parent emotional impact scores were also significantly worse than in a population based sample (83.6 points, 95% CI 79.3-88.0 vs 89.7, 95% CI 87.9-91.5, p = 0.02 and 67.7, 95% CI 61.9-73.6 vs 80.3, 95% CI 78.4-82.2, p <0.0001, respectively). Comparison of incontinent to continent children revealed a lower mean score on the parent emotional impact scale (62.6 points, 95% CI 55.5-69.8 vs 73.4, 95% CI 63.9-82.9), which approached significance (p = 0.06).
Although overall adolescent quality of life was comparable to norms, parents reported significantly impaired adolescent general health and family activity as well as a negative parental emotional impact. Further research is needed to identify interventions that can decrease the adverse impact of bladder exstrophy-epispadias on family activity and parent emotional distress.
很少有研究小组研究过患有膀胱外翻-尿道上裂的青少年的健康相关生活质量。我们使用儿童健康问卷-家长版 50 项（Child Health Questionnaire-Parent Form 50）研究了患有膀胱外翻-尿道上裂的青少年的家长报告的健康相关生活质量。
我们招募了 11 至 17 岁的膀胱外翻-尿道上裂患者及其家长作为参与者。家长通过自行填写经过验证的通用健康相关生活质量工具，即儿童健康问卷-家长版 50 项，作为青少年的代理受访者。我们收集了尿失禁、导尿状况以及医疗和手术史数据。将问卷的平均得分与基于人群的标准进行比较。
55 名患者的中位年龄为 14 岁，69%为男性，84%为白人。诊断包括 48 例膀胱外翻和 7 例尿道上裂。29 名（53%）参与者报告有尿失禁。终生手术次数的中位数为 9 次。尽管身体和心理社会综合测量得分与标准相当，但一般健康感知得分的平均值明显低于基于人群的样本（65.8 分，95%CI 61.4-70.2 与 73 分，95%CI 71.3-74.7，p=0.004）。家庭活动和家长情绪影响的平均得分也明显低于基于人群的样本（83.6 分，95%CI 79.3-88.0 与 89.7 分，95%CI 87.9-91.5，p=0.02 和 67.7 分，95%CI 61.9-73.6 与 80.3 分，95%CI 78.4-82.2，p<0.0001）。比较失禁和无失禁的儿童发现，家长情绪影响量表的平均得分较低（62.6 分，95%CI 55.5-69.8 与 73.4 分，95%CI 63.9-82.9），接近显著水平（p=0.06）。
尽管青少年整体生活质量与标准相当，但家长报告称，青少年的一般健康和家庭活动以及父母的情绪影响明显受损。需要进一步研究以确定可以减少膀胱外翻-尿道上裂对家庭活动和父母情绪困扰的不利影响的干预措施。
