GOSH is joined on this ambitious project by Evelina Children’s Hospital, Bristol’s Royal Hospital for Children, Birmingham Children's Hospital, Royal Hospital for Children, Glasgow, The Children’s Heart Federation and University College London. The project runs from 1 January 2014 to 28 February 2018. The project has received ethical approval from the National Research Ethics Service 13/LO/1442.
Why we are doing this project
Every year approximately 5,000 children undergo heart surgery in the UK. We have seen significant improvement in survival rates but at least 500 children per year experience 'surgical morbidities' such as brain injury or serious infection within the breastbone.
These events, some of which are potentially avoidable, can have major short- and long-term impacts on a child’s health and development. At the moment, it is not possible to estimate accurately the true scale of the impact of complications on children and families, or of the considerable costs to the NHS. This is because there is little solid information on how often such events occur, which patients are most at risk and what the precise impacts are. Evidence from the USA suggests that brain injury and delayed child development is a substantial problem but efforts to gather information on this in the UK have not been successful so far.
Without good quality information, patients and carers cannot be fully informed about the chances of suffering these complications. Crucially, it also makes it difficult for clinical teams to devise, target and evaluate initiatives to reduce surgical morbidity and improve further the safety and quality of the service delivered to patients. We want to rectify this.
What we are doing
The effects of post-operative complications on children and families go beyond the extra medical attention required to treat them, extending into patient experience and quality of life. Therefore, it is important that patient representatives were involved in selecting the complications to monitor and that patient reported outcomes, as well as clinical outcomes, are considered. With the help of the Children’s Heart Federation, we ran focus groups to understand the perspectives of patients and carers on which complications are most important to them. We also asked for patient and family views via an online forum.
A group of experts including doctors, nurses and psychologists, as well patient representatives, met twice over 18 months to decide on a list of complications that we will track over 18 months in each of the five centres. Members of the selection panel are given below:
|Name||Organisation||Role on the panel|
|Ms Rehana Ahmed||Independent||Family representative|
|Mr David Barron||Birmingham Children's Hospital||Heart surgeon|
|Dr Jane Cassidy||Birmingham Children's Hospital||Intensive care doctor|
|Dr Kate English||Leeds General Infirmary||Cardiologist|
|Dr Allan Goldman||Great Ormond Street Hospital||Intensive care doctor|
|Dr Helen Jepps||Bradford Royal Infirmary||Paediatrician|
|Ms Samantha Johnson||Evelina Children's Heart Organisation||Family representative|
|Dr Ravi Kumar||Royal Berkshire Hospital||Paediatrician|
|Ms Isobel Macleod||Royal Hospital for Sick Children, Glasgow||Intensive care nurse|
|Mr Andrew Parry||University Hospitals Bristol||Heart surgeon|
|Dr Samana Schwank||Children's Heart Federation||Family representative|
|Ms Emma Simmonds||Evelina London Children's Hospital||Clinical nurse specialist|
|Professor Tom Treasure||Independent||Chairperson|
|Mr Victor Tsang||Great Ormond Street Hospital||Heart surgeon|
|Professor Rob Tulloh||University Hospitals Bristol||Cardiologist|
|Dr Emma Twigg||Great Ormond Street Hospital||Clinical psychologist|
Neurological complications after surgery are some of the most important complications to measure, but there is currently no easy way to screen for them routinely and only the most severe tend to be picked up. So in year one we have tested a new way for nurses to assess child development before and after surgery. This method is still being refined after data collection ended in 2015. We hope that this will help us to detect any developmental problems more quickly, ensuring that each child receives the follow-up that they need.
Years two to three
In years two and three, we are recording how often the chosen complications occur for all children undergoing heart surgery in each of the five participating hospitals. We anticipate that we will collect data on approximately 3,000 patients that have undergone surgery. This will help us to understand which complications happen to which patients and how they depend on the child’s diagnosis, age and other factors.
When complications do happen, we are measuring the impact of these on the child and their family over six months, in terms of quality of life and extra time away from home, as well as any extra expense borne by the family or the health service as a result.
At the same time we want to identify the best approach for displaying and informing clinical teams and families about surgical morbidity. The ability for units to monitor complications will help to improve the service to patients and families.
Towards the end of the project, we will make recommendations for which morbidities should be routinely monitored and how this information should be given to families and professionals.
We will share these proposals with all of the UK paediatric heart centres, and patients and families through the Children’s Heart Federation.
Expert Definition Panel
We also have a group of experts to help us define how to measure the complications chosen by the selection panel (see above). The members of this expert panel are given below.
|Ms Rhian Brimmell||Evelina Children's Hospital||Intensive care nurse and data expert|
|Dr Kate Bull||Great Ormond Street Hospital||Paediatric cardiologist and family liaison|
|Dr Peter Davis||University Hospitals Bristol||Intensive care consultant|
|Dr Rodney Franklin||Royal Brompton Hospital||Paediatric cardiologist|
|Dr Aparna Hoskote||Great Ormond Street Hospital||Intensive care consultant|
|Ms Natasha Khan||Birmingham Children's Hospital||Paediatric cardiac surgeon|
|Mr Chuck McLean||Glasgow Royal Infirmary||Paediatric cardiac surgeon and Chair|
|Dr Warren Rodrigues||Glasgow Royal Infirmary||Intensive care consultant|
|Ms Liz Smith||Great Ormond Street Hospital||Intensive care nurse|
|Dr Sara Thorne||University Hospital Birmingham||Cardiologist|
If you have any questions about this project or would be interested in finding out more, then please do get in touch by telephoning 0207 829 8894 or emailing us.
The official study title is Selection, definition and evaluation of important early morbidities associated with paediatric cardiac surgery with NIHR project number 12/5005/06.
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