Abstract
Background: The primary aim was to describe patient-reported morbidity from neurogenic bladder and bowel dysfunction in a cohort of children with spina bifida. The secondary aim was to describe the overall surgical burden in these children. Methods: Children with meningocele or myelomeningocele, born between 2000–2016, and followed by a tertiary spina bifida center were evaluated in a cross-sectional cohort study using data from charts and a prospective national follow-up program. Results: In the group of 62 patients, clean intermittent catheterization (CIC) was used by 47 (76%) of the patients, and anticholinergic treatment was used by 36 (58%). More than one third of the patients reported inadequate results with daily urinary leakage. Laxatives and enema were used regularly by 45 (73%) and 39 (63%) patients, respectively. Inadequate results were reported by seven (11%) patients. One or more urogenital or gastrointestinal operations had been performed in 26 (42%) patients, with a total of 109 procedures overall. Conclusions: Despite substantial bowel and bladder management, a significant portion of children suffered from inadequate results concerning bladder and bowel control. Many surgeries were performed in a defined group of the children. Prospective, long-term studies can evaluate if more aggressive medical and/or surgical management could increase bowel and bladder control.
Highlights
IntroductionAround 15–20 children in Sweden, and 400,000 worldwide, are born with spina bifida each year [1]
Around 15–20 children in Sweden, and 400,000 worldwide, are born with spina bifida each year [1]. Most of these children suffer from neurogenic bladder and bowel dysfunction which may result in severe constipation, urinary and fecal incontinence, vesicoureteral reflux, urinary tract infections, and high intravesical pressures with risk of renal damage [2,3]
A high surgical burden was found to be concentrated within a defined group of children with MMC
Summary
Around 15–20 children in Sweden, and 400,000 worldwide, are born with spina bifida each year [1] Most of these children suffer from neurogenic bladder and bowel dysfunction which may result in severe constipation, urinary and fecal incontinence, vesicoureteral reflux, urinary tract infections, and high intravesical pressures with risk of renal damage [2,3]. Improved management of children with spina bifida has led to a higher rate surviving to adulthood, a high mortality risk exists throughout adult life [4,5]. During childhood, these children are subjected to extensive medical investigations and interventions [6]. One or more urogenital or gastrointestinal operations had been performed in
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