First-of-its-kind study will assess psychological impact of sudden cardiac death on children

Funded by the British Heart Foundation, the study 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, inherited cardiac conditions nurse at GOSH, PhD candidate at UCL, 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.”

Children who have lost a loved one to SADS undergo screening tests every year at the specialist SADS clinic at 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.

Imogen Law Hing Choy, a musical theatre student from Bedfordshire, has been involved with the project from an early stage, helping the research team by giving feedback on questionnaires as they were being developed. Imogen has had annual heart checkups since she lost her dad Mark to SADS in 2009, when she was three years old.

“My dad Mark was just 35 years old when he passed away” she said. “He had just got off a train when he collapsed, and his heart stopped. A defibrillator was used to shock his heart several times.

“Mum told me what had happened to Dad when he was in the hospital. I went to say goodbye to him. He was in hospital for a week before they withdrew his life support.”

Imogen has no clear memories of her dad, just pictures and videos, but has heard a lot about him from others. “Everyone says that Dad was a brilliant man. Very kind and very clever.

“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.”