Mini-EDACS
Research type
Research Study
Full title
Mini-EDACS: Eating and Drinking Ability Classification System for young children with cerebral palsy.
IRAS ID
229819
Contact name
Diane J Sellers
Contact email
Sponsor organisation
Sussex Community NHS Foundation Trust
Duration of Study in the UK
1 years, 6 months, days
Research summary
Research Summary:
Background:
Damage to the developing infant brain (cerebral palsy) can affect movements required to suck, bite, chew and swallow food and drink safely and efficiently. There is no agreement about how to measure eating and drinking abilities of children with cerebral palsy (CP) younger than 3 years. This limits the study of early development of eating and drinking skills and connections with probable outcomes in later life.We developed the Eating and Drinking Ability Classification System (EDACS) for children with CP from the age of 3 years. EDACS has been accepted by the international research community and is increasingly used in clinical practice including NHS. The existing content of EDACS is not suitable to describe the abilities of younger children who are still developing eating and drinking skills.
Aim:
We aim to develop and validate a new version of Eating and Drinking Ability Classification System (Mini-EDACS) suitable for use with children with CP aged 18 to 36 months.
Method:
1. Define content of Mini-EDACS:
We will define the content of Mini-EDACS by examining existing data of 130 young children with CP (18-60 months) and applying EDACS. Content of EDACS will be modified to create Mini-EDACS to capture and distinguish between eating and drinking abilities of children with CP aged 18 to 36 months.2. Refine and validate content of Mini-EDACS:
We will invite parents, professional and research experts to examine and refine the proposed content of Mini-EDACS using an international Delphi Survey until 70% agreement.3. Test reliability of Mini-EDACS:
Speech and language therapists (SLTs) and parents will use Mini-EDACS independently to assign a level describing eating and drinking abilities of children with CP aged between 18 and 36 months. The reliability of Mini-EDACS will be assessed by comparing pairs of judgments made by pairs of SLTs or parents vs SLTs.Summary of Results:
• The new Mini-EDACS provides age-appropriate descriptions of eating and drinking abilities of young children with cerebral palsy aged 18 to 36 months.
• Mini-EDACS is now part of the Eating and Drinking Ability Classification System (EDACS), providing a reliable way to describe succinctly how people with cerebral palsy usually eat and drink.
•EDACS describes the full range of eating and drinking ability in five distinct levels for people with cerebral palsy, including assistance required at mealtimes.• Mini-EDACS is reliable when different people use it to classify young children’s eating and drinking from video recordings.
• Parents of children with cerebral palsy, various types of health professionals and researchers in UK and Australia have helped to develop the Mini-EDACS.
• Families and professionals can use the EDACS plus Mini-EDACS to share knowledge, and to work in partnership to improve care.Who did the study and why?
This study was led by researchers at Chailey Clinical Services, part of Sussex Community NHS Trust. We worked together with a team of people in the UK including researchers from the PenCRU at the University of Exeter, Newcastle University, University of Brighton, University of Queensland in Australia and Griffith University in Australia.
The idea for the study came from families and health professionals who wanted the eating and drinking abilities of young children to be represented within the Eating and Drinking Ability Classification System (EDACS https://eur03.safelinks.protection.outlook.com/?url=http%3A%2F%2Fwww.edacs.org%2F&data=04%7C01%7Capprovals%40hra.nhs.uk%7Ce1703c416cf0471910d008d9ed7f0527%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C637801952068283335%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=IhXmqne64WvWSJzygQWw1h7j%2BgoiYiCUmYUDVWDMFnk%3D&reserved=0 ).
Sometimes impairments linked to cerebral palsy can limit the skills that someone needs to eat, drink and swallow safely and efficiently.
This can cause serious problems if particles of food or fluids enter the lungs, or if the person has inadequate nutrition or dehydration.Background
Cerebral palsy affects people’s lives in many different ways. Classification systems have been created to describe how cerebral palsy affects their ability to move (sit, stand and walk), to handle objects, and to communicate with others. Each of these systems classifies the full range of ability for each function using five levels, where Level I indicates least limitations, and Level V indicates the most limitations to function.
Each of the classification systems provides a common language that is easy to understand which can be used in clinical practice and research.
We took inspiration from these systems and set out to extend the Eating and Drinking Ability Classification System for people with cerebral palsy to include descriptions of very young children with cerebral palsy.What did we do?
We developed Mini-EDACS in several stages.
Using existing evidence we worked with researchers from Australia who had collected video data of young children with cerebral palsy when they were eating and drinking. They applied EDACS to 130 video recordings of young children with cerebral palsy aged between 18 to 36 months. They identified where changes were needed to show the developing eating and drinking skills of younger children.
Creating a draft classification system:
We created an initial version of Mini-EDACS using the feedback from the team in Australia.Consulting people with expert knowledge:
We shared the Mini-EDACS with an international group of 89 people with expert knowledge using a Delphi Survey. The Delphi Survey is a method used to seek consensus or agreement among a large group of people who do not necessarily meet each another face to face.
We collected their suggestions, and refined the Mini-EDACS, and shared it again in another round of the Delphi survey. Most participants agreed with descriptions of young children’s eating and drinking abilities in the first round (more than 90%). We made some slight changes to Mini-EDACS from recommendations by participants.
Checking the reliability of Mini-EDACS:
The descriptions of eating and drinking ability in the final version of Mini-EDACS were used by pairs of speech and language therapists to classify the eating and drinking abilities of 43 young children with cerebral palsy from video recordings of usual mealtimes. Parents and carers also provided some extra information about their child’s usual mealtimes. Speech and language therapists were chosen because they typically assess and manage the eating and drinking difficulties linked to cerebral palsy.
We examined whether speech and language therapists agreed with one another about levels of ability.
Finally, we asked parents and therapists what they thought about using Mini-EDACS.
What did we find?
Mini-EDACS describes the eating and drinking abilities of children from the age of 18 months to 36 months in five levels. The amount of assistance someone requires to bring food and drink to the mouth is described in three levels.
EDACS plus Mini-EDACS identifies safety as a key feature of eating and drinking linked to the risk of choking or aspiration (entry of particles of food and fluid into the lungs).
Another key feature is how efficiently someone eats and drinks linked to the time taken and how much food or fluid is lost from the mouth.
Each of the five levels of Mini-EDACS includes descriptions about developing biting, chewing and swallowing abilities, food and fluid textures that are managed and breath changes associated with eating and drinking.We found that speech and language therapists used Mini-EDACS in similar ways to each other to describe the eating and drinking abilities of the same children. They agreed with one another 58% of the time.
Some of the people we talked to thought that the differences in how speech and language therapists used Mini-EDACS might be linked to using video recordings of mealtimes.Parents and speech and language therapists thought Mini-EDACS was a useful tool. One parent commented that Mini-EDACS was clear because each level spells out the requirements so it was easy to identify the right level for their child. Another parent said that no-one had ever said that a rating score even existed for children with cerebral palsy and that overall they found using Mini-EDACS to be a positive experience. Most people found it easy to use.
Who reviewed our research to make sure it was done well?
The study is published in the journal Developmental Medicine and Child Neurology. https://eur03.safelinks.protection.outlook.com/?url=http%3A%2F%2Furl6570.hra.nhs.uk%2Fls%2Fclick%3Fupn%3DPbf8m0AMf80LgKkJSwbdGK9-2BmWTewa2b5GERF-2F-2FiwLkBLTvlGEvjowZU-2BaTVdG9fn4X-_E1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YKBXu9GVQ9AYNL6WdaxHfLUSb-2FGkakhJ-2BWkxoRekevH3QlR2rUHe9kLT4-2BVMmhCJXRx7n8RIRdcZ7N4aiPo8CeCs6BzIIpDRGQDA7XhHSxuBCWJRLOx0Dhd9HQg-2FfRRBtMzi2s0c-2FDL8iy8cdVOw6U7xfaBPuGPgK3KJOE0nRlGZw-3D-3D&data=04%7C01%7Capprovals%40hra.nhs.uk%7Ce1703c416cf0471910d008d9ed7f0527%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C637801952068283335%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=FT6Gpqu5XKfF4muzh5zwHD0lkEJn9RK%2Fk6Gwp80HqHE%3D&reserved=0
The journal will only publish research after independent reviewers and editors have decided that the study was done well and that it was important enough to publish.What could be done next?
The new Mini-EDACS is now part of the Eating and Drinking Ability Classification System which has been endorsed by experts in cerebral palsy, eating and drinking, and research, and also by people with CP and parent carers. EDACS is a reliable way of classifying someone’s eating and drinking abilities for use in both clinical and research contexts. The reliability of Mini-EDACS requires further study. Mini-EDACS classifications made in person with better knowledge of a young child’s eating and drinking may lead to higher reliability than we found using videos.
In future studies we would like to find out about how people use Mini-EDACS in a range of settings. We would also like to carry out more comparisons to check the reliability between the ways that parents and health professionals use Mini-EDACS.
EDACS has been translated into a number of different languages. Several research teams have requested permission to develop translations of Mini-EDACS.REC name
London - South East Research Ethics Committee
REC reference
17/LO/1557
Date of REC Opinion
27 Sep 2017
REC opinion
Favourable Opinion