Disability in Children with Myelomeningocele A Nordic Study

Abstract

This study was carried out to evaluate the medical impairments and disability among 527 children with myelomeningocele living in four Nordic countries. The information was extracted form questionnaires and data based on case records. The level of intellectual functioning was fairly high with 76% within normal range (IQ greater than 90). Shunt operations were performed in 68% of the children and 1/3 had had four or more shunt revisions. Twenty-three per cent walked without support. Bladder incontinence was found in 60% of the children whereas 4% were entirely continent. Intermittent catheterisation was used in 36% with higher frequency among girls (48%) than boys (24%). We found a higher incidence of bacteriuria among those who used catheterisation than among those who used manual compression. Bowel control was experienced by 112 (21%) of the children. The overall disability is classified according to Lorbber's 5-graded handicap scale and Lagergren's 3-graded scale. According to Lagergren's scale, 70% suffered form severe overall disability.

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

“…This is comparable to what Knab et al 8 found, although other studies found higher percentages, ranging from 25 to 41%. 6,11,12,15 Findings of previous studies show more frequent use of suppositories and enemas than ours. 8,10,12 Other aspects of bladder and bowel management Use of napkins Two-thirds of our population used napkins, which is in agreement with the findings of other studies.…”

“…7,10,13,15 By contrast, the definition of urinary incontinence varies across studies. In our study, we used a cutoff point of once a month, whereas most studies used other definitions, like socially dry, meaning dry intervals for at least 2 or 3 h. 6,9,11 Hagelsteen et al 6 found that one-quarter of their patients were socially dry and 14% were completely dry. Lie et al 11 found that one-fifth of the adolescents aged 13-18 years were socially dry (3 h).…”

“…2,6,11,14 Threequarters of patients using this method suffered from urinary incontinence. This high percentage is comparable to those reported in the literature.…”

“…Therefore, it is important to examine the prevalence and predictors of the impairments they have to deal with. A common problem in patients with spina bifida is incontinence, 1,[3][4][5][6][7][8][9][10][11][12][13][14][15] which is one of the secondary impairments that might affect their quality of life. 16 Krogh et al 10 found that 66% of the children with myelomeningocele aged 6 years or older who suffered from faecal incontinence reported that this problem had some or even a major influence on their social activities or quality of life.…”

“…1,[3][4][5][6][7][8][9][10][11][12][13][14][15] However, it is often difficult to compare the results of the various studies, because of differences in definitions and cutoff points, age of subjects, types of bladder and bowel management and types of spina bifida included. As a result, the reported prevalence of urinary and faecal incontinence in adolescent patients with spina bifida shows considerable variation across studies (46-80 and 13-71%, respectively).…”