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| Service delivery | Audit funding | Changes in care |
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| General areas |
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| Timely access to therapy | Assessments by physical therapists, occupational therapist, dieticians and speech-language pathologists provided evidence of the needs of survivors to site managers and to attending physicians. | Therapy and early developmental intervention as needed is available from time of hospital discharge at each site.
Children’s attending physicians are more aware of the developmental needs of survivors and the importance and benefit of early developmental intervention. |
| Enhancement of multidisciplinary assessment clinics | Therapists demonstrated the benefits of multidisciplinary assessments of survivors to their managers. | Funding for follow-up clinics has become part of the global budget for 4 of the 6 sites. |
| Identification of areas for focused developmental intervention. | Team assessments identified specific areas of developmental concerns. | Monitoring and developmental therapy interventions have become proactive and more focused to the specific needs of the child and family.
Education and advocacy for developmental community supports have resulted in improved services for children and families. |
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| Specific neurodevelopmental areas |
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| Functional development | Delays have been demonstrated [10]. | Involvement of our program staff with bedside developmental care, discharge planning, early developmental intervention, and parent education. |
| Speech-language development | Language delay was noted after arterial-switch operation [54]. A high proportion of all survivors were noted to have delay on the vocabulary score of the Language Developmental Survey of the Child Behaviour Checklist [38] (unpublished data). | All survivors after early cardiac complex surgery are now assessed by a speech-language pathologist at the 2-year visit. |
| Social communication | Impairments were shown after arterial-switch operation [55]. | Children are monitored during the preschool period for language and social communication skills. Intervention is started as needed. |
| Preschool behaviour | For our survivors, behavioural concerns do not exceed those in the normative population [56]. | Counselling avoids suggestions of possible future adverse behaviour as this can become a self-fulfilling prophecy. |
| Cerebral palsy | This is not a common complication among our survivors [57]. | Counselling at the time of surgery based on imaging suggests monitoring without predicting cerebral palsy. |
| Gross motor abilities | Delays have been demonstrated [58]. | Clinic plan to add a standardized motor measure [59]. |
| Pulmonary complications | Common following total anomalous pulmonary venous correction [60]. | Consideration of additional routine referrals for pulmonary consultation. |
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| Specific acute care areas |
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| Mean arterial pressure after re-warming in the operating room | Lower mean arterial pressure was associated with death [61]. | Blood pressure control in the operating room has been changed. |
| Transfusion in neonates undergoing the Norwood operation | Transfusion did not improve outcomes [62]. | Transfusion practices have been altered. |
| Extracorporeal life support | Time for lactate to fall and inotrope score are associated with outcome [63]. | There is increased focus on the optimal cannula size and initial blood flow rates when patients are placed on extracorporeal life support. |
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