This article is part of the supplement: 53rd Annual Meeting of the Society for Research into Hydrocephalus and Spina Bifida .

Poster presentation

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

Sven Mattsson¹ , Margareta Dahl², Ingrid Olsson³, Maggie Wendelius⁴, Lena Westbom⁵ and Eva Åström⁶

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

author email corresponding author email

from 53rd Annual Meeting of the Society for Research into Hydrocephalus and Spina Bifida
Belfast, UK. 24-27 June 2009

Cerebrospinal Fluid Research 2009, 6(Suppl 2):S43doi:10.1186/1743-8454-6-S2-S43

The electronic version of this abstract is the complete one and can be found online at: http://www.cerebrospinalfluidresearch.com/content/6/S2/S43

Published:

27 November 2009

© 2009 Mattsson et al; licensee BioMed Central Ltd.

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.

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