Council for Disabled Children, UK
CHUMS is investigating how the National Health Service (NHS) measures and records the health outcomes of children and young people with neurological conditions, including epilepsy by using Patient Report Outcome Measures (PROMS). A health outcome is the effect on a person’s health of medication or treatment.
To do this the Council of Disabled Children wants to ask children and young people what health outcomes are important to them. They will then ask them what they think about existing health outcomes questionnaires. The information children and young people give will be used to make sure the NHS uses Patient Report Outcome Measures that ask the right questions in a way children and young people understand.
Who will this study be recruiting?
Children and young people with epilepsy in the UK.
What will people taking part be asked to do?
You can either;
- talk to us together with a group of other young people; or
- talk to us on your own.
The meeting will take around 90 minutes and we want to:
- ask you about your experiences of health and health care
- show you some lists of questions that medical professionals use to find out whether their care makes a difference to young people’s health
- find out what questions you think are the best ones
Who can take part?
Children and young people with neurological conditions, this includes epilepsy.
Who is conducting the research?
The Council for Disabled Children is conducting this research. It has been asked by the Peninsula College of Medicine and Dentistry’s Peninsula Cerebra Research Unit for Childhood Disability Research (PenCRU) to speak to groups of children and young people about their health. Our researcher Andrew Fellowes will be carrying out the research.
Who has reviewed this study?
The CHUMS study has been checked by the County Durham & Tees Valley Research Ethics Committee.
Interested?
If you are interested in further information about the study, please contact Andrew Fellowes at AFellowes@ncb.org.uk or 020 7843 6060
In order to continue this important work, we need your help. Find out how you can make a regular or single donation to support research at Epilepsy Action
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