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

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.

Author information

Correspondence to Sven Mattsson.

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Open Access This article is published under license to BioMed Central Ltd. This is an Open Access article is distributed under the terms of the Creative Commons Attribution 2.0 International License (https://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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Keywords

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