High prevalence of incontinence among young adults with spina bifida: description, prediction and problem perception

Abstract

Study design: Cross-sectional study. Objectives: To study the prevalence of incontinence, problem perception and determinants of urinary and faecal incontinence in young adults with spina bifida. Setting: Nation-wide study in the Netherlands. Participants: A total of 179 of 350 invited patients participated, including 37 patients with spina bifida occulta and 142 with spina bifida aperta, of whom 119 had hydrocephalus; 41% were male and mean age was 20.4 (range 16-25 years). Methods: Data were collected from interviews, physical examination, neuropsychological tests and medical records. Results: Urinary and faecal incontinence was common in young adults with spina bifida (60.9 and 34.1%, respectively), regardless of the bladder and bowel management they used. The majority of urinary and faecal incontinent patients perceived this as a problem (69.7 and 77.0%, respectively). Spina bifida aperta, hydrocephalus and a level of lesion of L5 or above were associated with patients suffering from urinary and/or faecal incontinence. Predictors of perceiving urinary incontinence as a problem were, in addition to being incontinent, not having hydrocephalus and having a level of lesion of L5 or above. The only predictor of perceiving faecal incontinence as a problem was the frequency of incontinence. Conclusion: A majority of young adults with spina bifida suffer from urinary and faecal incontinence and most of them perceive their incontinence as a problem. Therefore, further efforts are important to improve urinary and faecal continence.

Expectation of life and unexpected death in open spina bifida: a 40‐year complete, non‐selective, longitudinal cohort study

“…[14][15][16] Improvements in management mean that about 75% of individuals now reach early adulthood, 8,10 and it is likely that future studies will show greater long-term survival. However, our cohort is the first to be followed up to the fifth decade, the first with complete ascertainment, and the first to show continuing high mortality in adulthood and a high rate of unexpected death.…”

“…23,27 Other series may include cases of spina bifida occulta or skin-covered meningocele, which tend to have lower mortality and disability. 14 …”

“…In three studies, the maximum age of survivors was less than 25 years, [10][11][12] and in one cohort 20% were lost to follow-up. 10 It has been widely suggested that, after the initial hazardous years, survival in spina bifida is near normal, [14][15][16] but there is no empirical evidence to support this. A prognosis for survival that lacks information on the mortality in older individuals may be over-optimistic.…”

Review of the efficacy and safety of transanal irrigation for neurogenic bowel dysfunction

“…5 Among children with spina bifida, constipation is very common and one-third are faecally incontinent. 6,7 Neurological disorder or damage causes bowel dysfunction by disrupting peristalsis (underactive propulsive or overactive segmental), or by precipitating rectal distension or colonic slowing. The extent of the symptoms of NBD (such as constipation, trouble with defaecation, faecal incontinence) is determined by the underlying pathology.…”

An Angled Stick Colonic Irrigation Device for the Bowel Management Programs in Patients with Impaired Bowel Function

“…Since bowel dysfunction is a major source of morbidity in individuals with spina bifida and congenital anal malformations, good bowel management is essential in their daily life [1,2]. The bowel management is a time burden for their family too [3].…”