Health Related Quality of Life in Patients With Spina Bifida: A Prospective Assessment Before and After Lower Urinary Tract Reconstruction

MacNeily, Andrew E.; Jafari, Siavash; Scott, Heidi; Dalgetty, A.; Afshar, Kourosh

doi:10.1016/j.juro.2009.02.060

Cited by 56 publications

(48 citation statements)

References 17 publications

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“…Lemelle et al (23) have shown that functional improvement in either continence or walking status is not associated with enhanced QoL. This phenomenon has also demonstrated by MacNeily et al (14), who showed that despite improvement of lower urinary tract symptoms after lower urinary tract reconstruction, HRQoL remains the same. MacNeily et al (14) postulate that this may be due to increased burden placed on the patient to attain continence, the imperfect continence success rates and/or the morbidity of the treatment options.…”

Section: Discussionmentioning

confidence: 75%

The association between urinary continence and quality of life in paediatric patients with spina bifida and tethered cord

Olesen

Kiddoo

Metcalfe

2013

Paediatrics and Child Health

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Section: Discussionmentioning

confidence: 75%

The association between urinary continence and quality of life in paediatric patients with spina bifida and tethered cord

Olesen

Kiddoo

Metcalfe

2013

Paediatrics and Child Health

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“…As the impact of fecal incontinence is weighed with other global QOL factors, the benefit to global QOL may be less significant. This phenomenon is highlighted by the work of MacNeily et al 16 (2009) that showed no global QOL benefit to lower urinary tract reconstruction in the spina bifida population.…”

Section: Discussionmentioning

confidence: 99%

Antegrade continence enema procedure: impact on quality of life in patients with spinal cord injury

Smith

Decter

2014

Spinal Cord

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PH Smith and RM DecterStudy design: This is a prospective cohort study. Objectives: Patients with spinal cord injury (SCI) often suffer from severe constipation/fecal incontinence. The antegrade continence enema (ACE) procedure is often used to control these distressing symptoms when medical management fails. Improvement in the quality of life (QOL) following the ACE procedure has been demonstrated in patients with fecal incontinence of various etiologies. We assess the impact of the ACE procedure on QOL in patients with fecal incontinence due to SCI. Setting: This study was conducted in the United States. Methods: We measured the impact of fecal incontinence on QOL in patients with SCI undergoing ACE using the validated fecal incontinence quality of life (FIQL) QOL instrument. The FIQL scores QOL in four domains: lifestyle, coping/behavior, depression/selfperception and embarrassment. Surveys were prospectively administered before and after surgery. Preoperative and postoperative survey scores were compared using two-sample T-test. Results: Between 2003 and 2010, the ACE procedure was performed on 17 patients with SCI, including 10 paraplegic and seven quadriplegic patients with an average age of 33 years at the time of surgery. Scores in all four QOL realms assessed by the FIQL instrument improved significantly following the ACE procedure. Stomal stenosis requiring channel revision occurred in three patients and was the most common complication. Conclusions: This is the first study to our knowledge that assesses the impact of the ACE procedure on the QOL in patients with SCI. Using a validated questionnaire, we demonstrated significant improvement in QOL related to fecal incontinence following the ACE procedure in these patients who are severely affected by their bowel dysfunction.

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“…This impact has been questioned recently when MacNeily et al failed to show any improvement in overall QOL following bladder augmentation in SB patients (16,17). Importantly, the QOL instrument used by MacNeily et al does not specifically ascertain the impact of fecal or urinary continence.…”

Section: Quality Of Lifementioning

confidence: 99%

Long-Term Sequela of Pediatric Bladder Reconstruction

Roth

Keenan

Cain

et al. 2015

Curr Bladder Dysfunct Rep

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Children with refractory neurogenic bladder (NGB) who have failed maximal medical management are presented with options for bladder reconstruction. It is critical to understand the long-term sequela of bladder augmentation and bladder neck reconstruction to properly counsel families regarding these procedures. Benefits may include preservation of renal function, continence, reduced risk of renal-related mortality and potential improvements in quality of life (QOL). However, these advantages must be balanced with the risks of bladder calculi, perforation, need for additional surgery, acid/base disturbances, vitamin B12 deficiency and malignancy. Therefore, careful patient selection and preoperative counseling are paramount for those undergoing bladder reconstruction which includes intestinal bladder augmentation, as these patients require lifelong vigilant follow-up. IntroductionChildren with neurogenic bladders (NGB) are initially managed with clean intermittent catheterization (CIC) and anticholinergic medications in order to maintain a sizable, continent, and compliant urinary reservoir. Despite early and aggressive intervention, some patients undergo lower urinary tract reconstruction (bladder augmentation, catheterizable channel and/or bladder neck reconstruction) to protect their upper tracts and achieve continence. In a few select patients with favorable urodynamics (UDS) and low outlet resistance, a bladder neck procedure (BNP) can be performed without bladder augmentation to achieve continence. Myelodysplasia, specifically spina bifida (SB), remains the most common etiology of NGB in the pediatric population. Due to medical advances, particularly in the realm of Urology, more SB patients with bladder reconstruction are surviving into adulthood. We review current literature regarding long-term sequela of bladder reconstruction in pediatric patients with neurogenic bladder, with a primary focus on bladder augmentations for refractory NGB secondary to SB.

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Health Related Quality of Life in Patients With Spina Bifida: A Prospective Assessment Before and After Lower Urinary Tract Reconstruction

Cited by 56 publications

References 17 publications

The association between urinary continence and quality of life in paediatric patients with spina bifida and tethered cord

The association between urinary continence and quality of life in paediatric patients with spina bifida and tethered cord

Antegrade continence enema procedure: impact on quality of life in patients with spinal cord injury

Long-Term Sequela of Pediatric Bladder Reconstruction

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