Improving mental health outcomes for congenital heart disease patients is among the top priorities for future research.
A group of patients, parents and healthcare professionals have worked with the James Lind Alliance to determine a set of focus areas for research into heart disease.
A full report has been published in the journal Open Heart.
Congenital heart disease is common in the UK
An estimated one in 100 children and more than 250,000 adults in the UK suffer from congenital heart disease. Improving the outcomes of heart surgery for congenital health and its impact on mental health were identified as key priorities by the group. Recognising the psychological effects of a diagnosis and the challenges of managing the disease were also cited as key areas of focus.
“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,” said Nigel Drury, clinician scientist at the University of Birmingham, and consultant in paediatric cardiac surgery at Birmingham Children’s Hospital.
“The top ten lists cover a wide range of issues that impact on those with congenital heart disease, looking beyond early survival to encompass more holistic outcomes such as quality of life and reducing the burden of living with congenital heart disease. 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,” he added.
Changing clinical practice
The paper has outlined a new national strategy to address these priorities and has been endorsed by national charities and professional organisation partners. The strategy will support the development of a new network in the UK and Ireland for studies across multiple sites. The network will focus on clinical trials with a view to changing clinical practice in congenital heart disease and will be launched next year.
“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,” Rajwant Kaur Singh, CEO of the Children’s Heart Federation.
“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,” he added.
“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,” concluded Kate Nash from Somerville Heart Foundation.
