Cardiology experts from Birmingham Health Partners have led the first national study into identifying research priorities for patients diagnosed with single-ventricle heart conditions.
Single-ventricle heart conditions occur in about 2 to 3 in every 10,000 births, and typically children have to undergo three or more open heart surgeries before school age, culminating in the Fontan procedure.
The success of such surgical procedures over the last 30 years has led to an increase in the number of children and adults living for longer with a Fontan circulation, but this surgery is not a cure and patients are at risk of late complications including premature death.
However, research into the condition and its impact for those living with it has been limited, highlighting the need to address where researchers should focus their efforts.
Previous studies have shown that less than 1% of children undergoing surgery for congenital heart diseases in the UK are enrolled in a clinical trial.
The specialist teams at BHP founder members Birmingham Children’s Hospital and Queen Elizabeth Hospital Birmingham (part of University Hospitals Birmingham) care for the largest population of children and adults in Europe living with single ventricle heart conditions.
The project was run in conjunction with Little Hearts Matter, the UK national charity for single-ventricle heart conditions based in Birmingham, bringing together patients, parents, healthcare professionals, researchers and other charities from across the country to establish national priorities for future research.
Published in Cardiology in the Young, the study produced a list of 30 questions categorised into nine groups, which were deemed to be the most important questions in this area of cardiology.
From what type of exercise is best for patients, to what are the alternatives to heart transplantation when the heart fails, these research priorities will be key in driving research and innovation to improve the outcomes and quality of life for children and adults with these rare but high-impacting congenital heart defects.
Lead author of the paper, Mr Nigel Drury, Consultant in Paediatric Cardiac Surgery at Birmingham Children’s Hospital said:
“The study was key in bringing together patients, their families, clinicians, researchers and charities to determine what are the most important questions that need to be addressed in single-ventricle heart conditions.”
Dr Paul Clift, Consultant Cardiologist at Queen Elizabeth Hospital Birmingham and co-author of the paper, added:
“The research priorities identified in this study will be central to directing research across the UK to improve the treatments and outcomes of these patients.”
Other leading organisations collaborating on the research, led by Birmingham Children’s Hospital and Queen Elizabeth Hospital Birmingham, include Great Ormond Street Hospital, Evelina Children’s Hospital, Newcastle’s Freeman Hospital, Bristol Royal Hospital for Children, and University Hospital Southampton.
Suzie Hutchinson, Chief Executive of Little Hearts Matter, said:
“Little Hearts Matter is delighted to see the publication of this important paper highlighting considered prioritisation of topics for research.
“We are even more delighted at the positive way that service users have been included at every stage of the study as it has ensured that a variety of different priorities have been identified.
“The next step for the charity is to ensure that all the identified areas of research are now picked up by researchers so that we have the evidence needed to support advances in treatment and care.”