Cardiovascular Journal of Africa: Vol 33 No 3 (MAY/JUNE 2022)

CARDIOVASCULAR JOURNAL OF AFRICA • Volume 33, No 3, May/June 2022 AFRICA 147 Pre-operative neurodevelopmental assessments were completed for 40 children. Data for a single child were excluded as the assessment could not be completed due to the surgery unexpectedly being moved forward (Fig. 1). Screening and eligibility rates were 84.7 and 83.3%, respectively. The rate of inclusion however was considerably lower at 68.3% (Table 1). A quarter of the children (n = 10) were diagnosed with DS. Childrenwithout andwithDS had comparable sociodemographic and clinical backgrounds. The median age of the children at pre-operative neurodevelopmental assessment was 7.4 months (range 1.4–20.9 months). Mean cardiac disease severity was moderate. Only 10 children (25%) had cyanotic defects. Most of the children (n = 27) were malnourished pre-operatively. Most children (n = 28) were scheduled to undergo definitive corrective cardiac surgeries (Table 2). With regard to the children’s families, the average level of education of parents was grade nine to 11 (lower to upper level of secondary education in the South African education system) and most families (n = 35) were from low socio-economic backgrounds. Sixty per cent of parents (n = 24) experienced clinically significant parenting stress at the time of their child’s pre-operative neurodevelopmental assessment (Table 2). Pre-operative developmental performance for children with CHD without DS (n = 30) was average, with mean composite scores across all three subscales of the Bayley-III within one standard deviation of the test mean score of 100 (scores > 85). There was considerable variability in individual developmental performance as reflected in the wide-ranging scores (Table 3). Eight children (26.7%) had hypotonia (Table 2). For children with CHD with DS (n = 10) language performance was at risk (mean score 70–84), while motor and cognitive performance was delayed (mean score < 70). There was considerable variability in individual developmental performance (Table 3). All children with DS (n = 10) had hypotonia (Table 2). Children with DS had significantly poorer motor (p < 0.0001), cognitive (p < 0.0001) and language performance (p < 0.001) pre-operatively on the Bayley-III compared to children without DS (Table 3). Disease severity (p = 0.02) and DS (p < 0.001) were significantly associated with poorer cognitive outcomes. Younger age at first cardiac surgery (p < 0.01) and DS (p < 0.01) were Table 1. Recruitment rates Recruitment aspects Definition Numbers Rate (%) Screening rate Percentage screened of total number of children < 30 months operated on over the period 72 out of 85 84.7 Eligibility rate Percentage eligible of those screened 60 out of 72 83.3 Inclusion rate Percentage included of those eligible 41 out of 60 68.3 Sceened for enrolment (n = 60) Ineligible to participate (n = 12) • Critically ill (n = 4) • Previous cardiac surgery (n = 8) Sceened for inclusions (n = 49) Included (n = 41) (Informed consent obtained) Pre-operative neurodevelopmental assessment completed (n = 40) Lost to enrolement (n = 11) • Parents declined participation (n = 1) • Parents unavailable to provide consent (n = 1) • Language barrier (n = 1) • Failure to arrive for surgery (n = 4) • Surgery cancelled, postponed or late admission (n = 4) Lost to assessment (n = 8) • Surgeries cancelled or unexpected change in surgery dates after hospital admission (n = 8) Lost to assessment completion (n = 1) • Surgery moved up unexpectedly resulting in incomplete assessment (n = 1) Six-month post-operative neurodevelopmental assessment completed (n = 22) Lost to assessment completion (n = 18) • Failed to undergo cardiac surgery (n = 2) • Mortality (n = 6) • Non-compliance with follow up (n = 5) • Untraceable (n = 4) • Family relocation (n = 1) Sceened for eligibility (n = 72) Fig. 1. Recruitment for pre-operative neurodevelopmental assessment.

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