Independence does not come with the method – treatment of neurogenic bowel dysfunction in children with myelomeningocele

Abstract

TAI and ACE are effective treatments, but time-consuming and difficult to perform independently. Higher parental satisfaction is obtained with ACE. Irrespective of method the children who can use the toilet independently report a higher quality of life, which makes efforts to support independence valuable.

The clinical features of paediatric neural tube defects changed in a tertiary care centre between 1997 and 2015

“…Other studies have reported that hydrocephalus and Chiari II malformation are present in the majority of children with open NTDs , with the occurrence of severe brainstem dysfunction and subsequent need for surgical decompression in 4–8.8% . Cognitive difficulties have been described in children with open NTDs both in regard to low IQ and the need for assistance with schoolwork . Previous research has pointed to the associated presence of hydrocephalus as an explanation , which is in agreement with our data.…”

“…Achieving continence is a significant secondary aim. Clean intermittent catheterisation is the solution most frequently used for children with open NTDs or lipomatous malformations with bladder dysfunction . If bladder dysfunction is not a threat to kidney function, then surgery is postponed until the child is old enough to consent.…”

“…Children with open NTDs often use enemas for bowel control, while children with skin‐covered NTDs often use laxatives . Enemas are time‐consuming procedures and difficult for the children to perform independently . As the children move into adolescence, independent toileting is prioritised.…”

“…As the children move into adolescence, independent toileting is prioritised. Previous studies have indicated that antegrade enemas may be easier to manage independently , but are associated with complications, such as stenosis, necrosis and infection.…”

Health‐related quality of life in children with myelomeningocele: a systematic review of the literature

“…The PedsQL child and parent formats were the most frequently used generic instruments in children. Nearly all of the studies that used the PedsQL found lower scores on all scales in the MMC children group as compared with the reference samples of healthy children (Oddson et al ; Abresch et al ; Flanagan et al ; Sumpter et al, ; Johansen et al ; Freeman et al ; Olesen et al ; Ramachandra et al ; Wide et al ; Murray et al ). The greatest reduction in HRQOL was found in physical functioning and the smallest one was in emotional functioning (Oddson et al ; Abresch et al, ; Sumpter et al ; Johansen et al ; Freeman et al ).…”