Sudden Cardiac Arrest, Sudden Cardiac Death Sudden loss of heart function, Sudden cardiac-related death
Conditions
Interventions
Not applicable.
Sponsors
Erasmus MC, Universitair Medisch Centrum Rotterdam
Eligibility
Age
No minimum to 99 Years
Inclusion criteria
Inclusion criteria: Index patient:Aged >24 hours and <18 years at the time of SCA or SCD. SCA: Documented cardiac arrest due to VF or VT and without a previously diagnosed (inherited) cardiac condition associated with an increased risk of SCA and SCD.SCD: Sudden unexpected death with either a confirmed cardiac cause or an unknown cause. Patients must have died 1) out-of-hospital, after resuscitation efforts were discontinued by HEMS; 2) out-of-hospital without HEMS involvement, only if the patient participated in the PESUDY procedure; or 3) in-hospital, after admission to an UMC. The latter includes children who initially achieved ROSC but later died in-hospital due to brain death, withdrawal of life-sustaining treatment (WLST), or recurrent cardiac arrest. Parents:Biological parents.For participation in the questionnaires or interview sessions, biological parents must have sufficient proficiency in Dutch.Relatives:Biological parents and biological (half-)siblings of index patients
Exclusion criteria
Exclusion criteria: Index patients meeting any of the following criteria will be excluded from participation in this study:Patients who died out-of-hospital without HEMS involvement and who do not participate in the PESUDY procedure. Patients with SCA presenting with documented asystole (this is likely due to hypoxia rather than a primary cardiac cause).Patients with a confirmed non-cardiac cause of sudden death (e.g., sepsis, trauma, intracranial hemorrhage).
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The primary parameters include the type and results of diagnostic evaluations performed in pediatric SCA and SCD patients and their relatives (biological parents and (half-)siblings), encompassing family history, post-mortem investigation, genetic testing, and cardiac evaluation. Additional primary parameters include whether an underlying (inherited) cardiac condition was diagnosed, and whether identification of such a condition led to the implementation of treatment and preventive measures in SCA survivors and in relatives (biological parents and (half-)siblings) diagnosed with an (inherited) cardiac condition. The occurrence of arrhythmic events in these SCA survivors and affected relatives will also be assessed, both prior to the index patient's initial SCA or SCD and after the implementation of treatment and/or preventive measures. | — |
Secondary
| Measure | Time frame |
|---|---|
| To explore experiences, motivations, needs, and perceived barriers of biological parents to consenting to: SCD: autopsy (patient), genetic testing (patient, biological parents and (half-)siblings), cardiac evaluation (biological parents and (half-)siblings).Data will be collected through:Descriptive questionnaires (including multiple-choice options with some open-ended questions) and,in-depth interviews.SCA: cardiac evaluation and genetic testing (patient, biological parents, and (half-)siblings). Data will be collected through:Descriptive questionnaire (including multiple-choice options with some open-ended questions). | — |
Countries
Netherlands
Contacts
Public ContactJ.A.E. Kammeraad
Erasmus MC, Universitair Medisch Centrum Rotterdam
Outcome results
None listed