Dutch Registry of Pediatric Cardiac Arrest

Condition(s) studied

Study summary

The goal of this observational study is to understand the long-term outcomes of children in the Netherlands who experience cardiac arrest, either in or outside of the hospital. The main questions it aims to answer are:

What are the survival rates and neurological outcomes in children after cardiac arrest?

What types of emergency and post-resuscitation care are provided, and how do they impact long-term recovery?

How do children and their families function over time after the event?

Researchers will analyze data from routine medical records and follow patients through standard outpatient visits. No extra procedures will be required beyond normal care. For those who survive to hospital discharge, additional follow-up data will be collected with consent.

Participants will:

Be children under 18 years old who have had a cardiac arrest and were treated in one of the seven participating academic hospitals

Have their routine medical care data collected anonymously

Be invited (if surviving) for follow-up visits at 3, 12, and 24 months post-arrest and at specific ages (5, 8, 12, and 17 years) to assess physical and psychological recovery

Eligibility

Primary outcome measure(s)

• Long-term Neurological Outcome (PCPC) — At 3, 12, and 24 months post-cardiac arrest; and at ages 8, 12, and 17 years, depending on age at event
  Neurological outcome will be assessed using the Pediatric Cerebral Performance Category (PCPC) scale, a validated functional outcome measure ranging from 1 to 6. A score of 1 indicates normal age-appropriate cerebral performance, while higher scores reflect increasing levels of neurological impairment: mild (2), moderate (3), severe (4), coma or vegetative state (5), and death (6). Lower scores indicate better neurological function. The highest available follow-up score will be used as the primary neurological outcome measure.
• Long-term Neurological Outcome (POPC) — At 3, 12, and 24 months post-cardiac arrest; and at ages 8, 12, and 17 years, depending on age at event
  Overall functional outcome will be assessed using the Pediatric Overall Performance Category (POPC) scale, a validated tool measuring global functional status in children following critical illness or injury. Scores range from 1 (normal) to 6 (death), with higher scores indicating greater overall disability. POPC complements the PCPC by evaluating broader aspects of daily functioning.
• Long-term Neurological Outcome (FSS) — At 3, 12, and 24 months post-cardiac arrest; and at ages 8, 12, and 17 years, depending on age at event
  Functional outcome will also be measured using the Functional Status Scale (FSS), a detailed, domain-specific assessment covering six areas: mental status, sensory, communication, motor function, feeding, and respiratory status. Each domain is scored from 1 (normal) to 5 (very severe dysfunction), with a total score ranging from 6 to 30. Lower total scores indicate better overall function.
• Neuropsychological Functioning in Pediatric Survivors (composite IQ) — At 12 and 24 months after cardiac arrest
  Neuropsychological outcomes will be assessed using standardized, age-appropriate cognitive and behavioral tests administered during follow-up. The assessment includes: Wechsler Intelligence Scale for Children (WISC-V) or Bayley Scales of Infant Development (Bayley-III) depending on age: Composite IQ or developmental index (range varies by age, mean = 100, SD = 15). Unit of Measure: Standardized test scores (mean ± SD) and proportion of patients with clinically significant impairment (%)
• Neuropsychological Functioning in Pediatric Survivors (BRIEF-2 or BRIEF-P) — At 12 and 24 months after cardiac arrest
  Neuropsychological outcomes will be assessed using standardized, age-appropriate cognitive and behavioral tests administered during follow-up. The assessment includes: Behavior Rating Inventory of Executive Function (BRIEF-2 or BRIEF-P): T-scores, where higher scores indicate more executive dysfunction (mean = 50, SD = 10). Unit of Measure: Standardized test scores (mean ± SD) and proportion of patients with clinically significant impairment (%)
• Neuropsychological Functioning in Pediatric Survivors (CBCL) — At 12 and 24 months after cardiac arrest
  Neuropsychological outcomes will be assessed using standardized, age-appropriate cognitive and behavioral tests administered during follow-up. The assessment includes: Child Behavior Checklist (CBCL): Total problem score, higher scores indicate more behavioral/emotional problems (T-score, mean = 50, SD = 10). Unit of Measure: Standardized test scores (mean ± SD) and proportion of patients with clinically significant impairment (%)
• Neuropsychological Functioning in Pediatric Survivors (PedsQL) — At 12 and 24 months after cardiac arrest
  Neuropsychological outcomes will be assessed using standardized, age-appropriate cognitive and behavioral tests administered during follow-up. The assessment includes: Pediatric Quality of Life Inventory (PedsQL): Total score from 0 to 100; higher scores reflect better quality of life. Unit of Measure: Standardized test scores (mean ± SD) and proportion of patients with clinically significant impairment (%)

Trial sites (7)

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