Macneily A E, Morrell J, Secord S
Division of Urology, University of British Columbia, Vancouver, BC, Canada.
J Urol. 2005 Oct;174(4 Pt 2):1637-43; discussion 1643. doi: 10.1097/01.ju.0000177730.12867.00.
Reconstruction for incontinent myelomeningocele is assumed to improve health related quality of life (HRQOL) yet there are no published data to support this assumption.
A retrospective cohort study was performed of 36 consecutive incontinent meningomyelocele cases undergoing surgery (augmentation, with or without Mitrofanoff, bladder neck reconstruction and cecostomy). Controls were matched 2:1 for age, lesion level, parental marital status, ambulatory status and shunt status. HRQOL was assessed with a previously validated disease specific discriminative instrument that stratifies for ages 12 years or less and 13 years or greater. An additional 5-point Likert questionnaire was used for self-scoring of bladder and bowel continence.
Responses were 89% and 84% for cases and controls, respectively. The 2-sample t testing for subjects 12 years old or younger revealed no significant difference in mean HRQOL score between those who underwent reconstruction (12, mean 165 +/- 23) and those who did not (9, mean 162 +/- 27, p=0.73). Results in older subjects were similar for cases (20, mean 190 +/- 23) and controls (3, mean 192 +/- 26, p=0.80). This finding occurred despite the fact that 78% of reconstructed cases achieved urinary continence for 3 hours or more with equal or superior self-reported bladder and bowel continence compared to controls.
We were unable to demonstrate superior HRQOL in patients over controls. Several possible interpretations exist, such as surgery may have no impact on HRQOL, patients might have scored much lower without surgery, or perhaps only caregiver quality of life improves. The impact of urinary tract reconstruction upon quality of life in the myelomeningocele population warrants further study.
对于大小便失禁型脊髓脊膜膨出症进行重建手术被认为可改善与健康相关的生活质量（HRQOL），但尚无已发表的数据支持这一假设。
对36例连续接受手术（扩大膀胱容量，伴或不伴Mitrofanoff术、膀胱颈重建术和盲肠造口术）的大小便失禁型脊髓脊膜膨出症病例进行回顾性队列研究。对照组按年龄、病变水平、父母婚姻状况、行走状态和分流状态以2:1进行匹配。使用先前验证过的针对特定疾病的鉴别工具评估HRQOL，该工具按12岁及以下和13岁及以上分层。另外使用一份5分制李克特问卷对膀胱和肠道控尿情况进行自我评分。
病例组和对照组的回复率分别为89%和84%。对12岁及以下受试者进行的双样本t检验显示，接受重建手术者（12例，平均HRQOL评分为165±23）与未接受重建手术者（9例，平均HRQOL评分为162±27，p = 0.73）之间的平均HRQOL评分无显著差异。年龄较大受试者的结果在病例组（20例，平均190±23）和对照组（3例，平均192±26，p = 0.80）中相似。尽管78%接受重建手术的病例实现了3小时或更长时间的尿失禁，且自我报告的膀胱和肠道控尿情况与对照组相当或更好，但仍出现了这一结果。
我们无法证明患者的HRQOL优于对照组。存在几种可能的解释，例如手术可能对HRQOL没有影响，患者若不进行手术评分可能会低得多，或者也许只有照顾者的生活质量得到了改善。尿路重建对脊髓脊膜膨出症患者生活质量的影响值得进一步研究。
