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Implementing the Eating and Drinking Ability Classification System (EDACS) Research
Summary of Research Study
‘Implementing the Eating and Drinking Ability Classification System (EDACS) across health and social care settings for adults with cerebral palsy to improve shared decision-making and eating and drinking outcomes’.
Sussex Community NHS Foundation Trust is running a 2-year research study. The study will look at the way adults with cerebral palsy, their healthcare professionals, families and caregivers talk together about eating, drinking, and swallowing difficulties linked to cerebral palsy. We want to know if using the Eating and Drinking Ability Classification System will help.
Why is this work important?
Cerebral palsy is the most common form of serious physical disability arising in childhood, from damage to the infant's brain. Cerebral palsy affects how someone sits, stands and moves, and how they use their hands. It may affect how someone communicates and learns. Some people cannot use movements required to eat, drink, or swallow safely and efficiently. Sometimes people cannot eat or drink enough to stay healthy. Some people may have problems with chest infections because of food or drink entering their lungs when they swallow. This is called aspiration. It may not be obvious when someone has difficulties with eating, drinking and swallowing; these difficulties can cause serious ill health and can sometimes be fatal.
In the UK, there are more adults with cerebral palsy than children. As adults with cerebral palsy get older, it is more likely that they will spend more time in hospital because of respiratory illness, malnutrition, dehydration and constipation. The National Institute for Health and Care Excellence (NICE) advises GPs to ask all people with cerebral palsy questions about eating, coughing, choking and chest infections in every review appointment to improve health outcomes.
We developed the Eating and Drinking Ability Classification System (EDACS) to measure and describe the eating, drinking and swallowing abilities of people with cerebral palsy. EDACS shows how much someone’s eating, drinking and swallowing is affected in levels I to V. Level I means that eating and drinking is ‘safe and efficient’ through to Level V which means that eating and drinking is ‘unsafe’. See Figure 1 below. People with cerebral palsy, their parents and experts agreed with the content of EDACS, which can be used reliably by professionals and parents for children with cerebral palsy.
[Diagram of the Eating and Drinking Classification System Eating and Drinking Ability Classification System (EDACS) (sussexcommunity.nhs.uk)]
What is the work about?
The study aims to answer the following questions:
How do healthcare professionals, adults with cerebral palsy, families and caregivers discuss eating, drinking and swallowing difficulties and risks to health?
How can EDACS be used by healthcare professionals to share risks linked to eating, drinking and swallowing difficulties with adults with cerebral palsy, families and caregivers?
How can EDACS be used to make shared decisions and sustainable plans to reduce health risks from eating/drinking/swallowing difficulties?
How will we complete this work?
The work is divided into three workstreams.
We will talk to adults with CP, family members and caregivers about their experiences of talking to professionals about eating, drinking and swallowing difficulties. We will ask them to use EDACS, and “think aloud” when they do so. We will find out what they understand about eating, drinking and swallowing difficulties and the associated health risks, and see if they understand EDACS in the way it was intended.
Different healthcare professionals work with adults with CP to ensure safe and efficient eating/drinking/swallowing and nutrition. We will hold 6 discussion groups to find out how professionals talk to adults with cerebral palsy, families and caregivers about eating, drinking and swallowing difficulties. Group participants will use EDACS and give feedback about its potential usefulness.
We will use our findings from Workstream 1 and Workstream 2 to develop ways to use EDACS across different settings. Key professionals will try out these new ways. We will ask adults with cerebral palsy, family members, carers and professionals to use EDACS. We will test the reliability of EDACS by comparing how different people use EDACS for the same person with cerebral palsy.
What difference will this work make?
This study will answer questions about the use of EDACS by professionals, people with cerebral palsy, their families and carers. We will use our findings to identify links between the use of EDACS and potential health benefits. We will seek funding for a bigger study to examine the benefits of using EDACS to improve people’s health and increase the cost-effectiveness of care.
For further information, please contact:
Tel: 01825 722112
Email: [email protected]
Specialist Information Officer and Cerebral Palsy Programme Lead
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