Heart surgery and impact on mental health among new national priorities for congenital heart disease research

• Patients, parents, charities and healthcare professionals agree key focuses for future research and innovation for disease affecting around half a million people in UK
• Priorities will be used to drive a national strategy, focusing research efforts on the most important issues, to be launched early next year

Children and adults have said that improving outcomes of heart surgery and how congenital heart disease impacts on mental health should be among the top priorities for future research.

Published today in Open Heart, a team of UK patients, parents and healthcare professionals worked with the James Lind Alliance in a national priority setting partnership to determine a set of focuses for research into congenital heart disease (CHD) which is affects 1 in 100 children and an estimated more than 250,000 adults in the UK.

Among the priorities identified for future research in children and adults were improving the outcomes of heart surgery for CHD and the impact of CHD on mental health, recognising the significant psychological effect of diagnosis and life-long management of the disease.

Funded by the George Davies Charitable Trust, more than 500 people responded to the initial survey and following a prioritisation survey and two workshops, two top 10 lists of key priorities for research into child/antenatal CHD, and adult CHD were agreed.

Other areas of focus include research to enable less invasive interventions, improve CHD screening before and after birth, using new technologies and innovation to personalise care and better outcomes, and improve quality of life for children and adults living with CHD.

Mr Nigel Drury, Clinician Scientist at the University of Birmingham and Consultant in Paediatric Cardiac Surgery at Birmingham Children’s Hospital, and lead author of the study said:

“Working with parents, patients, and the healthcare workers who care for them, we have identified the research areas that are key to advancing the management of congenital heart disease from before birth through to adulthood.

“The Top 10 lists cover a wide range of issues that impact on those with CHD, looking beyond early survival to encompass more holistic outcomes such as quality of life and reducing the burden of living with CHD. Identifying national priorities for research provides a platform to answer the questions that matter most, and we are finalising a national strategy on how to address them.”

Transforming collaborative research

As well as publishing the priorities for research, the paper outlines how the new national strategy to address the priorities will be taken forward, with endorsement from national charity and professional organisation partners.

The strategy, which will be launched early next year, will see the development of a new network in the UK and Ireland for studies across multiple sites, focusing on clinical trials that have the potential to change clinical practice in CHD.

Other initiatives include the setting up of a national CHD patient and public involvement group made up of patient, parent, and charity members, who will actively contribute to the development, conduct and reporting of research.

Rajwant Kaur Singh, CEO of the Children’s Heart Federation said:

“The Children’s Heart Federation (CHF) is fully aware of the importance of listening to the needs and concerns of children with heart conditions and those who care for them, to better enable them to grow to live independent and fulfilled adult lives. We were therefore enthusiastic to be involved in this valuable research from the outset, with our Trustees, staff team and patient and parent members participating throughout. Looking forward, we are keen to ensure the priorities are given adequate attention to enable the best possible outcomes and quality of life for children born with heart conditions.”

Kate Nash from Somerville Heart Foundation said: 

"As the UK's national charity for people born with a heart condition, Somerville Heart Foundation welcomes this research illuminating mental health for those born with a heart condition, and the need for further research in this area, as well as reinforcing how important we know heart surgery outcomes are. We congratulate Nigel Drury and the whole team."