More information about text formats
I welcome Himmelmann’s editorial concerning the prevention of respiratory problems for individuals with cerebral palsy1. As a speech and language therapist working within a multi-disciplinary nutrition team, I recognise the need to increase our understanding of the complex interactions between risk factors through collaboration across stakeholders. It is of particular concern that solids or liquids in the lungs or windpipe have been identified as the cause of death for almost a quarter of people with cerebral palsy2.
With this in mind, we developed the Eating and Drinking Ability Classification System (EDACS) for people with cerebral palsy from age 3 years. EDACS classifies limitations to eating and drinking ability in 1 of 5 levels, replacing frequently used terms “mild”, “moderate” and “severe” which lack shared definition. Key features of “safety” and “efficiency” are used to determine 5 distinct levels of ability: from Level I Eats and drinks safely and efficiently through to Level V Unable to eat or drink safely – tube feeding may be considered to provide nutrition. EDACS demonstrated strong content validity and excellent inter-observer reliability when used by speech and language therapists3. EDACS is free to download from www.edacs.org along with sixteen completed translations. Ten other language translations are currently in process.
Himmelmann1 points out associations between limitations to gross motor function and...
Himmelmann1 points out associations between limitations to gross motor function and someone’s eating and drinking abilities. We found that there was a statistically significant but only moderate positive correlation between EDACS and the widely used GMFCS4 for a group of children with CP (n=128 Kendall’s tau 0.5)3. The clinical relevance of this is that some children with limited gross motor function will show greater ability when eating and drinking; conversely, other children who walk with or without assistance may eat and drink with increased risk of choking or aspiration.
Someone’s eating and drinking ability is not readily observed in most clinical contexts. Whilst video-fluoroscopic swallowing examinations will support identification of “silent aspiration”, it provides a useful but partial view of the overall clinical picture. Some health professionals may rely on parent or carer report. Parents were involved in the development of EDACS and found it easy to use to describe their children’s eating and drinking abilities. However, questions remain about parents’ use of EDACS to describe their children’s eating and drinking abilities. Direct comparisons of parents' and speech and language therapists’ classifications using EDACS revealed more disagreements than between pairs of speech and language therapists, although these were consistent: parents either agreed with speech and language therapists or parents systematically rated their children as more able than speech and language therapists, by one level3.
EDACS provides a framework which makes explicit the extent of the disagreement between parents and professionals including implications for safety and efficiency of children's eating/drinking. There is uncertainty whether children experience adverse health outcomes because of these disagreements. Disagreements between parents and healthcare teams regularly occur in this emotionally charged area of function. It can be challenging for the multi-disciplinary team to provide children with cerebral palsy and their parents with person-centred healthcare with consequent negative impacts on the well-being and quality of life of their child and family5.
EDACS provides a framework with potential to support person-centred healthcare. Further work needs to be carried out to implement use of EDACS across community and acute healthcare settings to fully realise its preventative potential.
1. Himmelmann K. Putting prevention into practice for the benefit of children and young people with cerebral palsy Archives of Disease in Childhood Published Online First: 18 July 2018. doi: 10.1136/archdischild-2018-315134
2. Glover G and Ayub M (2010). How people with learning disabilities die. Published by Improving Health and Lives: Learning Disabilities Observatory. http://www.improvinghealthandlives.org.uk/uploads/doc/vid_9033_IHAL2010-... accessed 21 September 2013.
3. Sellers D, Mandy A, Pennington L, Hankins M and Morris C (2014). Development and reliability of a system to classify the eating and drinking ability of people with cerebral palsy. Developmental Medicine & Child Neurology 56(3):245-251
4. Palisano R, Rosenbaum P, Walter S, Russell D, Wood E and Galuppi B (1997). Development and Reliability of a System to Classify Gross Motor Function of Children with Cerebral Palsy. Developmental Medicine &Child Neurology 39:214 -223.
5. Cowpe E, Hanson B and Smith C (2014). What do parents of children with dysphagia think about their MDT? A qualitative study. BMJ Open 4 e005934.