Gastrostomy tube feeding of children with cerebral palsy

Abstract

This commentary is on the original article by Dahlseng et al. on pages 938-944 of this issue. Much of the research on the nutritional and feeding problems of children with cerebral palsy is limited to single centres and is based on relatively small numbers of children. There are two notable exceptions to this and these are studies deriving from the North American Growth in Cerebral Palsy Project1 and the Surveillance of Cerebral Palsy in Europe Network (SCPE-NET). Using the latter registry, Dahlseng et al.2 have utilized a cross-sectional descriptive study design to investigate the prevalence of feeding difficulties and the approach to management in 1295 children with cerebral palsy in six European countries. Oral-motor dysfunction mirrors gross motor development and thus the majority of children with the most severe deficits (Gross Motor Function Classification System [GMFCS] levels IV and V) have feeding problems and associated growth restriction. This growth restriction increases progressively with age and thus mandates early nutritional intervention. Gastrostomy tube feeding has been shown to improve growth and health in children with cerebral palsy3,4 and a recent study has demonstrated that early intervention with gastrostomy tube feeding is associated with less growth restriction.5 Moreover, the increasing availability of gastrostomy tube feeding is associated with improved survival of those children who have gastrostomies.6 Given what we now know about the benefits of gastrostomy tube feeding, what makes the results of the present study remarkable is the variation found across Europe with usage in over-two-thirds of children with cerebral palsy (GMFCS levels IV and V) in Western Sweden but only 12% in such children in Portugal. This variation in usage was accompanied by variation in degree of growth retardation with those in Sweden being the least and those in Portugal being the worst affected. There was similar variation found in age at gastrostomy tube placement ranging from 16 months of age in Sweden to 70 months of age in Northern England. The lack of any association between growth status and duration of gastrostomy tube feeding in this study is probably a reflection of the fact that weight-for-age and height-for-age measurements were available for one time point only. This highlights the need for more large scale prospective studies which serially investigate the impact of gastrostomy feeding on growth over time. What factors could account for the variation in gastrostomy tube feeding found across the continent? Clinical practice obviously differs from country to country as does access to health services. Cultural factors such as parental resistance to the idea of abdominal tube insertion (and as well as the support systems in place to deal with these in individual countries) will play an important part in the readiness to accept gastrostomy tube feeding as a management strategy. Gastrostomy feeding is, of course, not a panacea for feeding difficulties in children with cerebral palsy and comes with its own problems including concerns about an increased prevalence of obesity in such individuals. Such concerns may well increase the threshold for gastrostomy tube usage in some areas. Finally, as the authors themselves point out, the lack of an agreed consensus on the indications for gastrostomy tube insertion also contributes to variations in clinical practice. The arrival of such a consensus will be promoted by having an internationally agreed classification scale of eating and drinking abilities which is in urgent need of production.