Dysphagia is prevalent in children with severe cerebral palsy

See related article on page 625 In April 2006 a revised definition and classification of cerebral palsy (CP)1 stated that CP was accompanied by a range of disturbances including disturbances of sensation, perception, and communication. However, dysphagia did not rate a mention in the long list of factors reported to be associated with CP, nor was dysphagia mentioned in any of the accompanying articles or subsequent correspondence about the strengths and weaknesses of the revised definition and classification. The article by Calis et al. confirms the impression and clinical experience of many health professionals who work with children with CP: dysphagia is a prevalent and persistent problem. Calis et al. found that just 1% of children with severe generalized CP had no dysphagia. This finding will not surprise many clinicians concerned with dysphagia and is in line with previous reports.2,3 A strength of the study by Calis et al. is confirmation about the widespread prevalence of dysphagia in a larger population of children with severe generalized CP. Most importantly, they provide evidence that their participating children did not differ markedly from those not participating, suggesting the results have generalizability to the broader population of children with CP. Children with dysphagia are at high risk of poor nutrition,4 which can lead to impaired growth and development.5 Furthermore, dysphagia can also have an impact on respiratory health with oropharyngeal and/or gastro-esophageal aspiration, possibly resulting in respiratory complications such as aspiration pneumonia. Of the 99% of children with dysphagia described by Calis et al., 76% had moderate to severe dysphagia, and 15% profound dysphagia, meaning that they could not ingest food or liquid orally. These data provide further compelling evidence for the need to recognize formally that dysphagia affects the majority of children with severe CP and that it is time to recognize dysphagia in the range of disturbances in CP alongside, epilepsy, communication disorders, or secondary musculoskeletal problems. The findings of Calis et al. raise concerns about how best health professionals can identify early dysphagia in children with CP with a view to preventing or reducing the potentially serious consequences. Relying on parents to report their concerns is an obvious starting point. Yet, a third of the parents in this study reported that they did not have any difficulty feeding their children emphasizing as others have done2 that there is a poor correlation between parent-reported feeding problems and the prevalence of clinically defined dysphagia. Calis et al. asked parents just one question: ‘Do you consider eating and drinking in your child as a problem?’ Parents could provide one of four answers ([almost] ‘never’, ‘sometimes’, ‘often,’ and [almost] ‘always’). If parents answered ‘no’ to this single question, no further probes or specific queries were made about feeding function. Would more careful, detailed questioning have elicited more complete information? Others have suggested that parents might find it difficult to be objective about a long-term problem that confronts them daily, such as feeding.2 Prolonged feed times are often reported and observed,3 yet the association between these observations and parent reports is not always strong.2 Calis et al. suggest that the key clinical implication of their study is the need to consider screening all children with CP for dysphagia. More detailed, careful questioning is necessary and we argue that a clinical dysphagia assessment should be routinely undertaken by a multi-disciplinary team on all children with moderate to severe CP. However, before screening can be instituted there is an urgent need to educate and inform health professionals about the presence of dysphagia in children with CP. Raising awareness could begin by including dysphagia in the accepted definition and description of CP. Calis et al. alert us to the most vulnerable group of children with severe generalized CP. Previous studies have highlighted that the children most at risk include those with severe gross motor impairment3 and severe oral motor dysfunction.2 Collectively, these results beg an obvious question: have we made any progress in identifying those children most at risk? Understanding that parents can greatly underestimate the presence of and extent of dysphagia is crucial.