CARDIOVASCULAR JOURNAL OF AFRICA • Volume 33, No 3, May/June 2022 AFRICA 149 comparable at just more than half. Seven of the children without DS (70%) and all five of those with DS (100%) who qualified for rehabilitation therapies before cardiac surgery still qualified at six months post cardiac surgery. Discussion Recruiting parent and child pairs into CHD research is a known challenge.49,50 Based on current evidence and our own experience, perhaps recruitment challenges rather than a lack of indication and/or possible clinical value may explain why pre-operative neurodevelopmental assessment is rarely undertaken in research practice, even in medically stable children with CHD. Screening and eligibility rates in the current study were acceptable at 84.7 and 83.3%, respectively. The rate of inclusion was however considerably lower at 68.3%, with 20 children being lost to inclusion, mainly due to environmental barriers or factors external to the child. Environmental barriers preventing pre-operative assessment in this study included language, parentrelated and logistical barriers. Similar environmental barriers to pre-operative neurodevelopmental assessment have been reported.21 Once children were included, there was a high rate (98%) of completion of pre-operative neurodevelopmental assessment. The only other study mandating comprehensive pre-operative neurodevelopmental assessment has similarly reported a high rate of completion of neurodevelopmental assessment of 93.3%, once children were included.14 Other investigators have reported wide ranging rates of completion of pre-operative neurodevelopmental assessment, ranging between 24 and 68.7%.14,23,51 Variable participant profiles, set inclusions and study protocols likely explain the variable rate of completion of pre-operative assessment. Cardiac neurodevelopmental follow up did not form part of standard cardiac care offered at the study site at the time of the study. In our experience, putting systems in place to allow for sufficient time for recruitment and pre-operative neurodevelopmental assessment was a challenge. Clinical staff in the admitting ward were unfamiliar with the processes involved as there was not yet a strong neurodevelopmental focus with the necessary infrastructure at the site to accommodate these assessments.49,50 Fostering collaborative relationships with clinical staff was essential in getting their support and ensuring successful participant recruitment in this study.49 Similar challenges in establishing recruitment systems where cardiac neurodevelopmental follow up is not well established have been reported.41,52 Time constraints did not allow for the building of a good rapport with parents beforehand and pre-operative neurodevelopmental assessment was often the first contact parents had with the investigator and a neurodevelopmental component to their child’s cardiac care.21,49 Consistent with previous findings, language barriers where parents spoke non-local languages challenged recruitment.48 Lower levels of parent education and language barriers requiring the services of an interpreter placed an additional strain on the limited time available for pre-operative assessment, as more time was needed to gain informed consent and to complete the questionnaires and the developmental assessment. Children undergoing cardiac surgery were admitted only the day before the scheduled surgery, as was standard practice at the clinical site. After admission, children underwent routine pre-operative medical examinations, which left some children irritable at the onset of the neurodevelopmental assessment. Furthermore, children were unfamiliar with the test environment and it was difficult to create an environment conducive to developmental assessment in a busy clinical ward.49,50 The BayleyIII assessment is also lengthy, taking up to an hour to complete, depending on the child’s age.53 It is important to consider that these circumstances may have negatively impacted on the children’s developmental performance during testing. Table 4. Six-month post-operative developmental performance on the Bayley-III subscale Bayley-III subscale CHD with DS (n = 5) CHD without DS (n = 17) p-value Cognitive Median (range) Mean ± SD 55 (55–65) 58 ± 4.5 90 (55–100) 90.9 ± 13.3 0.0001*** Language Median (range) Mean ± SD 65 (57–79) 66.2 ± 6.9 91 (65–109) 88.8 ± 13.5 0.002** Motor Median (range) Mean ± SD 55 (49–70) 57.4 ± 8.3 97 (49–121) 92.3 ± 18.9 0.001*** Children at risk for or presenting with developmental delays (n = 22) Cognitive, n (%) At risk Delayed 0 5 (100) 2 (11.8) 1 (5.8) 0.43 < 0.0001*** Language, n (%) At risk Delayed 1 (20) 4 (80) 6 (35.5) 2 (11.8) 0.52 0.003** Motor, n (%) At risk Delayed 1 (20) 4 (80) 3 (17.6) 2 (11.8) 0.9 0.003*** Number of children with delays in one or more areas of development, n (%) 5 (100) 3 (17.6) < 0.0001*** Number considered to be at risk for developmental delays, n (%) 1 (10) 6 (35.3) 0.13 Children qualifying for referral to rehabilitation therapies (scores < 85) (n = 22) Cognitive, n (%) 5 (100) 3 (17.6) 0.001 Language, n (%) 5 (100) 8 (47.1) 0.04* Motor, n (%) 5 (100) 5 (29.4) 0.007* Number of children qualifying for rehabilitation therapies, n (%) 5 (100) 10 (58.8) 0.09** Baylay-III subscale scores; < 70 delayed, 70–84 at risk and > 85 normal. Statistical significance: *p < 0.05, **p < 0.01, ***p < 0.001. Table 5. Predictive value of pre-operative developmental assessment Bayley-III subscale Before cardiac surgery, n (%) Six months post cardiac surgery, n (%) p-value Children with developmental delays* CHD without DS 6 (20) 3 (17.6) 0.84 CHD with DS 9 (90) 5 (100) 1.0 Number of children considered to be at risk for developmental delays CHD without DS 10 (33.3) 6 (35.3) 0.87 CHD with DS 1 (10) 0 0.48 Number of children qualifying for rehabilitation therapies** CHD without DS 16 (53.3) 10 (58.7) 0.72 CHD with DS 10 (100) 5 (100) 1.0 *Seven out of eight children identified with delays at six months post cardiac surgery also had delays before cardiac surgery, including two (66.7%) children without DS and all five (100%) with DS. **Twelve out of 15 children qualifying for rehabilitation therapies also qualified before cardiac surgery, including seven (70%) children without DS and all five (100%) with DS.
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