Lower urinary tract reconstruction for spina bifida -- does it improve health related quality of life?

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.