Impact of Cardiac Screening Due to Death on Children and their Parents
Research type
Research Study
Full title
The Impact of Clinical Cardiac Evaluation on Children and Young People Undergoing Screening Due to Sudden Arrhythmic Death Syndrome, Sudden Infant Death Syndrome or Unexplained Cardiac Arrest and their Parents
IRAS ID
340563
Contact name
Jo Wray
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
Z6364106/2025/05/56 health research, Data Protection Ref Number
Duration of Study in the UK
1 years, 3 months, 31 days
Research summary
Our aim is to generate the evidence base for improving the care received and patient/family experience for children and young people undergoing heart screening due to sudden cardiac death and their parents.
Sudden Arrhythmic Death Syndrome (SADS) accounts for around 500 deaths a year in the UK and is defined as a sudden and unexpected death for which no cause can be found. Sudden Infant Death Syndrome (SIDS), is defined in the same way and applies to infants less than a year old. Relatives of SADS or SIDS victims are recommended to have heart tests in order to identify potential inherited heart conditions.
The psychosocial burden affecting this patient group is often overlooked, especially in the process of clinical screening. Due to the unexpected nature of SADS, death of a close family member, uncertainty regarding the cause and the implied risk of an inherited heart condition, surviving family members are at high risk of psychological distress. These events may have a profound and lasting impact and force unforeseen change into the family system.
There are no published data on psychological outcomes of these children and young people, however research with adults has demonstrated that around half of relatives will suffer significant psychological difficulties.
We will:
• Carry out semi-structured interviews with 15 young people aged 12-18 years old and 15 parents of children aged 0-18 years old, in order to understand their experiences and the psychological impact of undergoing cardiac tests in these circumstances.
• Synthesise the data produced by interviews in order to select an existing validated questionnaire or scale (one for children & young people and one for parents)
• Administer questionnaires to all eligible children, young people and parents at Great Ormond Street HospitalREC name
Yorkshire & The Humber - Leeds East Research Ethics Committee
REC reference
25/YH/0205
Date of REC Opinion
9 Dec 2025
REC opinion
Further Information Favourable Opinion