The Registry and Follow-Up of Complex Pediatric Therapies Program of Western Canada: A Mechanism for Service, Audit, and Research after Life-Saving Therapies for Young Children

Table 1

Disciplines that assess and measures used for neurodevelopmental and neurocognitive follow-up after complex cardiac surgery at ≤6 weeks of age.

Follow-up age	Disciplines assessing	Specific tests required for outcomes
6 to 8 months after surgery/therapy	Physical therapist*; Audiologist**; Physician/nurse***
18 to 24 months (range 18–36 months)	Psychologist; Audiologist**; Speech-language pathologist*; Physician/nurse***	Bayley Scales of Infant and Toddler Development—3rd Edition. All components include Cognitive Scale, Language Scale (receptive and expressive language), Motor Scale (fine and gross motor), Social-Emotional Scale, and Adaptive Behavior Scale [37].; Child Behavior Checklist with Language; Development Survey [38].
4.3 to 5.5 years (range 4–6 years)	Psychologist Audiologist**; Speech-language pathologist Physician/nurse***	Wechsler Preschool and Primary Scale of Intelligence—3rd Edition [39].; Visual Motor Integration—5th Edition [40].; Behavior Assessment System for Children—2nd Edition [41].; Adaptive-Behavior Assessment System—2nd Edition [42].; Pediatric Quality of Life Inventory, Generic Core Scales [43], and Cardiac Module [44].; Clinical Evaluation of Language Fundamentals—2nd Edition [45].
8 years ± 6 months (range 6.5 years to 16 y 11 months) selectively for children with single ventricle defects, heart transplantation, extracorporeal membrane oxygenation	Psychologist Audiologist**; Physician/Nurse***	Wechsler Intelligence Scale for Children—4th Edition [46].; Visual Motor Integration—5th Edition [40].; Wechsler Individual Achievement Test—2nd Edition [47].; NEPSY—2nd Edition [48].; Adaptive Behavior Assessment System—2nd Edition [42].; Behavior Rating Inventory of Executive Function Parent Form [49].; Child and Adolescent Scale of Participation [50].; Strength and Difficulties Questionnaire [51].; Pediatric Quality of Life Inventory, Generic Core Scales [43].

*Clinical assessment, no data collection. Measures individually determined.
**Standard audiological assessment for at-risk children [32].
***At each visit, the pediatrician and nurse complete a predetermined questionnaire about illnesses and hospitalizations as well as diet, feeding, sleep, immunizations, and parent support; record growth; complete a general and neurological examination. If required, other disciplines such as occupational therapist, dietician, or social worker assesses the child/family.