Volume 2 Supplement 1

49th Annual Meeting of the Society for Research into Hydrocephalus and Spina Bifida

Open Access

Bridging health care gaps for new survivors – a total population study of young persons with MMC

  • Sven Mattsson1Email author,
  • Eva Astrom1,
  • Margareta Dahl1,
  • Bo Ericsson1,
  • Ingrid Olsson1,
  • Maggie Wendelius1 and
  • Lena Westb1
Cerebrospinal Fluid Research20052(Suppl 1):S10

DOI: 10.1186/1743-8454-2-S1-S10

Published: 30 December 2005

Background

Since the number of newborns with myelomeningocele (MMC) is decreasing a national network of neuropaediatricians with long experience of MMC has been founded in Sweden. Our first task was to identify the areas of medical concern in adolescents with MMC.

Materials and methods

A total national population study has been performed. The first analysis concerns those born 1986 – 89 and is based on review of medical records.

Results

175 adolescents born 1986–89 were living in Sweden on July 1st 2004, 86 females and 89 males. Their special medical characteristics are presented in Table I. Single symptoms and signs specifically/not specifically related to the MMC were recorded but not presented here.

Table 1

Individuals with MMC

No

%

 

No

%

Mental retardation (MR)

46

26

Recurrent urinary tract infections

27

15

Active epilepsy

24

14

CIC

149

85

Hydrocephalus

150

86

Anticholinergic medication

70

40

- Shunts

145

 

Surgery (eg Mitrofanoff)

42

24

- Ventriculocisternostomi

5

 

Incontinence pads

125

71

Tethered cord syndrome (Op)

62

36

Reduced kidney function

3

1,7

No independent walking indoors

92

53

Anal water irrigation

103

59

Walking with aids

35

20

MACE

17

10

Walking independently indoors

47

27

Gastrostomy

6

3,5

Orthopedic surgery/ortoses

128

73

Respiratory aids

5

3

Scoliosis (operated 44)

74

42

Recurrent bedsores

34

19

Conclusion

In Sweden approximately 40 adolescents with MMC will yearly reach adulthood the next decennium. A majority of them will have medical problems with need for a multidisciplinary team approach in order to supply the best care in adulthood.

Authors’ Affiliations

(1)
Dept of Pediatrics, University Hospital

Copyright

© The Author(s) 2005

This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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