Cerebral palsy (CP) is the most common form of serious physical disability arising in childhood, from damage to the infant brain. CP affects how someone sits, stands and moves, and how they use their hands. It may affect how someone communicates and learns. CP can affect the movements required to eat, drink, and swallow safely and efficiently. This can result in some people being unable to 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, however these difficulties can cause serious ill-health and can sometimes be fatal.

In the UK, there are more adults with CP than children. As adults with CP get older, it is more likely that they will spend more time in hospital due to problems associated with eating and drinking difficulties, such as respiratory illness, malnutrition, dehydration and constipation. The National Institute for Health and Care Excellence (NICE) recognises this as an issue and already advises GPs to ask all people with CP questions about eating, drinking and respiratory health, in every review appointment, in an attempt to improve health outcomes.  

What is the Eating and Drinking Ability Classification System  (EDACS)?

EDACS is a classification system to measure and describe the eating, drinking and swallowing abilities of people with cerebral palsy. EDACS divides eating, drinking and swallowing skills into 5 levels, from ‘safe and efficient’ (Level I) to ‘unsafe’ (Level V).

Find out more here: www.edacs.org.

EDACS Descriptions and Illustrations

We developed EDACS by consulting with people with cerebral palsy, parents and experts around the world. EDACS has been tested to see how easy and reliable it is when used by speech and language therapists and parents.

EDACS is the product of an independent research project funded for three years by the National Institute of Health Research, under its Research for Patient Benefit Programme (Grant Reference Number PB-PG-1208-18144). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

EDACS is being used successfully with children with CP, and we want to see if it is helpful for adults. For more information about EDACS, visit:  www.edacs.org.

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?

The work is divided into three workstreams.

Workstream 1

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.

Workstream 2

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.

Workstream 3

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.

Who are the research team?

The research is being led by Dr Diane Sellers.

Diane is a Clinical Specialist and Lead Speech and Language Therapist for Chailey Clinical Services, Sussex Community NHS Foundation Trust. Diane is an experienced Research Speech and Language Therapist.

Diane is being assisted by Dr Mel Adams, a Clinical Academic Speech and Language Therapist employed by Sussex Community NHS Foundation Trust to work on the project.

Contact

Diane Sellers - Chief Investigator                               
Melanie Adams - Research Assistant (Weds-Thurs)
Tel: 01825 722112
Email: sc-tr.iedacs@nhs.net
Chailey Clinical Services, Beggars Wood Road, North Chailey, near Lewes. BN8 4JN