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Neurodevelopmental follow up of cardiac patients

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Recommended best practice for Neurodevelopmental Follow up of cardiac patients from the Green Lane Paediatric and Congenital Cardiac Services (PCCS)

Goals for Neurodevelopmental Follow up of cardiac patients are three fold

  1. To provide a service to families so children receive timely intervention
  2. To have accurate local data for the purposes of audit
  3. To benchmark the cardiac surgical outcomes against international standards

Criteria for Neurodevelopmental Referral of Cardiac Patients

  1. All Neonatal surgery (0-28 Days of age at time of surgery)
  2. Infants and Children (0 - 4 years of age) who have had;
    1. Aortic Arch surgery via sternotomy
    2. Bidirectional Glenn with or without circulatory arrest
    3. Circulatory arrest or Regional cerebral perfusion
    4. Pre- op and post-operative significant low output or arrest - including non surgical cardiac patients
    5. ECMO or LVAD support post-op (include those with cardiomyopathy or arrhythmia)
    6. Prolonged PICU stay post cardiac surgery (> 5 days) including non surgical patients e.g. cardiomyopathy or arrhythmia patients
  3. Late postoperative signs of neurodevelopmental delay / abnormalities (e.g. at clinic appointment or catheter appointments)
  4. Two or more domains below the cut-off on the Ages and Stages Questionnaire
  5. Surgeons or cardiologists request

Exclusion

  1. Children 5 years of age or older at initial assessment
  2. Known pre-existing neurological deficit already receiving neurological or developmental follow-up with Paediatrician.

Process of Referral

PCCS will identify eligible children and inform Paediatricians outside of Auckland in the discharge summary that they meet our criteria for follow-up. The local paediatrician will need to organise assessment and any neurodevelopmental follow up (PCCS would greatly appreciate a copy of the results of developmental assessments).

Assessments

All children should be at least 6 months post operation at assessment.

Assessment at 2 and 4 years of age is recommended:

  • At 2-3 years of age use Bayley Scales of Infant & Toddler Development III (Mental & Motor)
  • For 3-4.5 years of age the Stanford-Binet Intelligence Scales 5th Edition

Follow-up referrals (for special neurodevelopmental input) post assessment will need to be made by the local paediatrician doing the assessment.

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Document Control

  • Date last published: 01 August 2016
  • Document type: Clinical Guideline
  • Services responsible: Paediatric Cardiology
  • Author(s): Ana Kennedy, Kirsten Finucane
  • Editor: Marion Hamer
  • Review frequency: 2 years