The CHAMPION study has been commissioned by the NHS to develop new ways for measuring the quality of services for congenital heart disease services for both children and adults.
The purpose of the study is to try and measure what people living with CHD and their families think is most important to them. The CHAMPION study want to hear your views about your experience of CHD services.
How has COVID-19 affected you and your experience of CHD services?
What does quality of CHD services mean to you?
What information about CHD services did you have when you or your relative was diagnosed?
What information about CHD services would you like to have had?
What information would like to know about longer term outcomes for your relative?
The private online discussion group is live – click to join the Facebook Group and talk about what you think!
The views and experiences of teenagers with heart conditions are extremely valuable so if you are a teenager with a heart conditions join the Facebook Group for teenagers here and if you are the parent of a teenager, please encourage them to join the forum.
You can write as much or as little as you want on the forum and can join or leave at any time.
What is the CHAMPION study?
At the moment, the NHS mainly monitors the quality of services for congenital heart disease (CHD) by checking and reporting on survival rates 30 days after surgery for CHD in children. Survival rates are really high and we know that there are many other things that reflect the quality of services.
The CHAMPION study has been commissioned by the NHS to develop new ways for measuring the quality of services for congenital heart disease services for both children and adults. This includes developing fair ways of measuring survival after surgery in adults and also developing ways of reporting longer term outcomes for people treated for CHD.
It is crucial to try to measure what people living with CHD and their families think is most important to them. In this online forum, the study hope to hear about your views on what should be measured and reported about the quality of CHD services.
Who is running the study?
Three charities (Little Hearts Matter, the Children’s Heart Federation (CHF) and the Somerville Foundation) are helping to run online forums to help understand patient and family perspectives as part of the study.
The research team are based at University College London with collaborators at Great Ormond Street Hospital, Alder Hey Children’s Hospital, University Hospitals Bristol, Leeds Teaching Hospital, Magdi Yacoub Institute, Barts Health NHS Trust, Royal Brompton and Harefield NHS Trust and Newcastle University. LCHU Surgeon and CHSF Trustee Carin Van Doorn is part of the Research Team, with Leeds being a collaborator in the study.
How do I get involved?
There is a private discussion group on Facebook asking a series of questions over a few weeks about the quality of health services for congenital heart disease. They are interested to hear from young adults with CHD, or parents, siblings, relatives, or friends involved in the care of children with CHD.
If you would like to join the discussion forum you will need to have a Facebook account. When you request to join the discussion forum you will be asked to give some basic information about yourself (your age, sex, region and role e.g. patient, parent, relative, sibling, friend) to help understand better what people are telling the study. You will then be given access to the group and can begin posting in the discussion. There will be some specific questions posted for everyone to respond to but they would also be interested in just hearing any stories about your care that you would like to share.
The Facebook forum is private, voluntary, and you can choose to participate or leave at any time. Your experiences and comments will only be visible to other members of the group and the forum moderators. All names will be removed from discussion posts before being sent to the researchers, who will not have any access to any identifiable information about you (name, date of birth etc.).
The private Facebook discussion group is open now! click to join the Facebook Group.
If you are a teenager with a heart condition we want to hear what you think join the Facebook Group for teenagers here.
How can I find out more?
If you would like to find out more about the study you can download the detailed study information sheet or email firstname.lastname@example.org