Study to explore how children are affected by a relative’s sudden cardiac death

The research, funded by a £250,000 grant from the British Heart Foundation, will assess how children are affected by sudden arrhythmic death syndrome (SADS) and the years of heart checkups that follow.

The researchers hope that finding out how children are affected, and what impacts them the most, will improve the guidelines that help doctors and nurses take action to lessen the psychological stress these children are under.

The work will focus on children who have lost a relative due to SADS, a sudden death after a cardiac arrest where no obvious cause has been found. Around 500 people die from SADS in the UK each year, and relatives often experience anxiety, post-traumatic stress and other psychological problems afterwards.

To identify potential genetic heart conditions, children must attend annual screening appointments to carefully monitor their heart, until they are 18.

Jennifer Tollit, a PhD candidate at UCL Institute of Cardiovascular Science and lead researcher on the study, said: “Relatives impacted by SADS have different psychological needs to those who have lost family members to a known condition. The lack of a diagnosed heart problem means that as well as the grief of losing a loved one, they are stuck in a limbo of not knowing why that person died and whether they are affected too.

“The children’s annual screening tests are clinically very important and can prevent further devastating events in these families, but the psychological impact for children and young people has been very understudied in the past. We hope that this research will help fill this gap in our knowledge so we can provide better support in the future.”

Professor Juan Kaski (UCL Institute of Cardiovascular Science) said: “Current international guidelines recommend screening of relatives of SADS victims throughout childhood, but the evidence base for this approach is very limited, and the psychological impact has not been systematically investigated.

“This research we hope will address these unmet needs and allow us to develop better ways to support young people going through these devastating events.”  

Children who have lost a loved one to SADS undergo screening tests every year at the specialist SADS clinic at Great Ormond Street Hospital (GOSH). These include an electrocardiogram (ECG) to assess the heart’s electrical rhythms, an echocardiogram and MRI scans to view the structure and function of the heart, and exercise testing to see how the heart copes.

The study will initially interview parents and children between the ages of 12 and 18 going through regular screening at GOSH. Researchers will ask them about their experience and understanding of the tests and why they are done, as well as their experience of losing a loved one.

The interviews will explore common themes such as health-related anxiety, confusion about why the tests are done, or the trauma of suddenly losing a close relative. This will then be used to select questionnaires related to these topics. This approach will ensure the results are true to what children and parents are saying about their experiences.

Around 400 children aged 12 to 18 will be asked to do the selected questionnaires at GOSH over several years. The results will reveal more than ever before about the challenges this group of children face as a result of their loss.

Professor Bryan Williams, Chief Scientific and Medical Officer at the British Heart Foundation, who is also based at UCL Institute of Cardiovascular Science, said: “Sudden arrhythmic death syndrome strikes without warning, devastating hundreds of families in the UK each year. Families are left searching for answers and can be affected by the traumatic event for years.

“Researchers will be guided by the children and parents throughout the study. Taking this approach will be crucial to understanding the psychological impact of SADS and will hopefully allow doctors and nurses to take steps to heal it.”

Imogen’s story

“I see Dad as my guardian angel and shining star. I think he’s shining down on me and looking after me. I’m quite a positive person but I have missed the opportunity to get to know my dad as a person. I was lucky because Mum is so brilliant and did everything for me.”

There was no specific cause found for Mark’s cardiac arrest but medical staff thought it was likely to be a heart condition, which Imogen might or might not have. She has had annual checkups since.

Now 19, she explains “I’ve had lots of tests done over the years, including exercise stress tests. Normally I’ll have an ECG test and an echo scan. Once I also had an MRI scan of my heart. I also had a loop recorder fitted in 2019 when I was 14.”

“To date I’ve not been found to have anything wrong with my heart. I’ve spent my whole life going to hospital for testing every year – it’s just what I’ve been used to.”

Imogen has experienced health-related anxiety and a fear of death throughout her life. “I assume it comes from what happened to Dad,” she said. “I just fixate on it. The anxiety is always more present when I’m due to go to hospital soon. I also have a fear of needles. I did have counselling organised by GOSH. I’m better at managing things now but I still feel anxious sometimes.”

Imogen has been involved in Jennifer’s research from an early stage, sharing her experiences and giving feedback to improve the experience of participants.

“I think the work Jenny is doing is really important.” Imogen said. “Everybody deals with losing someone to SADS differently. You can really struggle at a young age. In some ways it’s quite sad that this has been my normal life, because losing your dad so young isn’t normal.

“It’s really important to run checks on the people left behind when someone dies suddenly. Getting people talking about this very difficult situation is good.”

Source

• BHF story

Links

• Professor Juan Kaski’s academic profile
• UCL Institute of Cardiovascular Science
• UCL Population Health Sciences

Images

• Top: Imogen Law Hing Choy and her dad, Mark. Middle: Imogen and her mum Donna. 

Media contact

Mark Greaves

E: m.greaves [at] ucl.ac.uk

+44 (0)20 3108 9485