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  • Open Access

A Swedish national follow-up programme for children and adolescents with myelomeningocele

  • 1Email author,
  • 2,
  • 3,
  • 4,
  • 5 and
  • 6
Cerebrospinal Fluid Research20096 (Suppl 2) :S43

https://doi.org/10.1186/1743-8454-6-S2-S43

  • Published:

Keywords

  • Cohort Study
  • Future Development
  • Renal Damage
  • National Register
  • Occupational Therapy

Background

In 1998 a Swedish national follow-up programme for children and adolescents with myelomeningocele (MMC), with focus on neurogenic bladder and bowel dysfunction was launched. In 2004, 600 children and adolescents with MMC from 0 - 18 years of age were included in the programme and the needs for further medical follow-up after transition into adulthood for the cohort born 1986 - 89 has been presented (Olsson et al 2007). A subgroup of 39 children with MMC in the south-east region of Sweden born 1993 - 2003, was evaluated (Wide et al 2007), showing a high success in preventing renal damage when keeping to the proactive follow-up programme. The programme was evaluated and revised, now enlarged to include also other areas for follow-up e.g. neonatal care, gastroenterology, orthopedics, neurosurgery, endocrinology, cognition, sexuality, latex allergy, transition etc, also including guidelines for physiotherapy and occupational therapy. The programme will also include a national MMC-register. The aim is to get standardized evidence based national recommendations for the follow-up of children and adolescents with MMC from birth into adulthood.

Materials and methods

A network of professionals working with children with MMC has presented guidelines as far as possible evidence based, for the different areas of follow-up. Editors are neuro-pediatricians from the six university hospitals in Sweden. Regular cohort studies are planned for every 3-4 year period to follow the future development of the total MMC-population in Sweden.

Results

The first chapters are available on Internet (blf.net; neuropediatrik, vårdprogram) on the site of the Swedish Neuro Pediatric Society, SNPF. A national register is under construction.

Conclusion

The Swedish national follow-up programme from 1998 for children and adolescents with neurogenic bladder and bowel dysfunction is after evaluation and revision, enlarged to include all aspects of follow-up for children and adolescents with MMC. The programme was launched January 2009 and is available on the Internet.

Authors’ Affiliations

(1)
Department of IKE/Pediatrics, University of Linköping, SE 581 85 Linköping, Sweden
(2)
Akademiska Barnsjukhuset, 751 85 Uppsala, Sweden
(3)
Drottning Silvias Barn o ungdomssjukhus, SE 416 85 Göteborg, Sweden
(4)
Barn o ungdomskliniken, Norrlands Universitetssjukhus, SE 901 85 Umeå, Sweden
(5)
Barn o ungdomssjukhuset, Universitetssjukhuset, SE 221 85 Lund, Sweden
(6)
Astrid Lindgrens Barnsjukhus, Karolinska Sjukhuset, SE 171 76 Stockholm, Sweden

Copyright

© Mattsson et al; licensee BioMed Central Ltd. 2009

This article is published under license to BioMed Central Ltd.

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