Lack of uniformity in the clinical assessment of children with lipomyelomeningocele: a review of the literature and recommendations for the future.

Objective: An objective clinical assessment tool whose accuracy and reproducibility can be validated is essential for the initial evaluation, selection for surgery and surveillance of children with lipomyelomeningocele (LMMC). The aim of this study was to analyse the large number of such tools presently in use and recommend an alternative that could lead to greater uniformity between different series and greater consistency in the assessment of individual patients.

Methods: A systematic review of the literature between January 1980 and December 2010 was undertaken and details of how the children in each series were assessed and the degree to which age was taken into account recorded.

Results: Thirty-six different assessment tools were used in 40 different publications. None was validated in all aspects. Objective measures were used most in urological assessments but rarely in other domains. Age-specific assessments were used in only 10 % of publications.

Conclusion: This study confirmed that the assessment tools for evaluation of children with LMMC are inconsistent, often vague and poorly validated. This compromises the ability of clinicians who care for them to compare studies across centres for both treated and untreated children. We have sought to highlight those criteria which are relevant, measurable and reproducible and which might be combined into an easily applied assessment.