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Deterioration of functional abilities in children surviving the Fontan operation
- M. Florencia Ricci, Billie-Jean Martin, Ari R. Joffe, Irina A. Dinu, Gwen Y. Alton, Gonzalo G. Guerra, Charlene M. T. Robertson, For the Western Canadian Complex Pediatric Therapies Follow-Up Program
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- Journal:
- Cardiology in the Young / Volume 28 / Issue 6 / June 2018
- Published online by Cambridge University Press:
- 25 April 2018, pp. 868-875
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Functional abilities are needed for activities of daily living. In general, these skills expand with age. We hypothesised that, in contrast to what is normally expected, children surviving the Fontan may have deterioration of functional abilities, and that peri-Fontan stroke is associated with this deterioration. All children registered in the Western Canadian Complex Pediatric Therapies Follow-up Program who survived a Fontan operation in the period 1999–2016 were eligible for inclusion. At the age of 2 years (pre-Fontan) and 4.5 years (post-Fontan), the Adaptive Behavior Assessment System-II general adaptive composite score was determined (population mean: 100, standard deviation: 15). Deterioration of functional abilities was defined as ⩾1 standard deviation decrease in pre- to post-Fontan scores. Perioperative strokes were identified through chart review. Multivariable logistic regression analysis determined predictors of deterioration of functional abilities. Of 133 children, with a mean age at Fontan of 3.3 years (standard deviation 0.8) and 65% male, the mean (standard deviation) general adaptive composite score was 90.6 (17.5) at 2 years and 88.3 (19.1) at 4.5 years. After Fontan, deterioration of functional abilities occurred in 34 (26%) children, with a mean decline of 21.8 (7.1) points. Evidence of peri-Fontan stroke was found in 10 (29%) children who had deterioration of functional abilities. Peri-Fontan stroke (odds ratio 5.00 (95% CI 1.74, 14.36)) and older age at Fontan (odds ratio 1.67 (95% CI 1.02, 2.73)) predicted functional deterioration. The trajectory of functional abilities should be assessed in this population, as more than 25% experience deterioration. Efforts to prevent peri-Fontan stroke, and to complete the Fontan operation at an earlier age, may lead to reduction of this deterioration.
Screening for language delay after life-saving therapies in term-born infants
- Brenda G. Clark, Bryan V. Acton, Gwen Y. Alton, Ari R. Joffe, Irina A. Dinu, Charlene M. T. Robertson
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- Journal:
- Cardiology in the Young / Volume 26 / Issue 7 / October 2016
- Published online by Cambridge University Press:
- 28 December 2015, pp. 1343-1351
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Background
Strong recommendations have been made for the periodic developmental surveillance, screening, and evaluation of children with CHD. This supports similar calls for all at-risk children in order to provide timely, structured early developmental intervention that may improve outcomes. The aim of this study was to determine the accuracy of screening for language delay after life-saving therapies using the parent-completed vocabulary screen of the language Development Survey, by comparing screening with the individually administered language scores of the Bayley Scales of Infant and Toddler Development, Third edition.
MethodIn total, 310 (92.5%) of 335 eligible term-born children, born between 2004 and 2011, receiving complex cardiac surgery, heart or liver transplantation, or extracorporeal membrane oxygenation in infancy, were assessed at 21.5 (2.8) months of age (lost, 25 (7.5%)), through developmental/rehabilitation centres at six sites as part of the Western Canadian Complex Pediatric Therapies Follow-up Group.
ResultsVocabulary screening delay was defined as scores ⩽15th percentile. Language delay defined as scores >1 SD below the mean was calculated for language composite score, receptive and expressive communication scores of the Bayley-III. Delayed scores for the 310 children were as follows: vocabulary, 144 (46.5%); language composite, 125 (40.3%); receptive communication, 98 (31.6%); and expressive communication, 124 (40%). Sensitivity, specificity, positive predictive values, and negative predictive values of screened vocabulary delay for tested language composite delay were 79.2, 75.7, 68.8, and 84.3%, respectively.
ConclusionHigh rates of language delay after life-saving therapies are concerning. Although the screening test appears to over-identify language delay relative to the tested Bayley-III, it may be a useful screening tool for early language development leading to earlier referral for intervention.
Prediction of preschool functional abilities after early complex cardiac surgery
- Gwen Y. Alton, Soreh Taghados, Ari R. Joffe, Charlene M. T. Robertson, Irina Dinu, the Western Canadian Pediatric Therapies Follow-Up Group
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- Journal:
- Cardiology in the Young / Volume 25 / Issue 4 / April 2015
- Published online by Cambridge University Press:
- 30 April 2014, pp. 655-662
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Background: It is important to identify early predictors of functional limitations in children after congenital heart surgery to optimise their independence as they prepare for school. The purpose of this study is to determine potentially modifiable predictor variables of functional abilities in pre-school children who underwent complex cardiac surgery at 6 weeks of age or earlier. Methods: This prospective inception cohort study comprised a sample of 165 survivors (63% boys) who had complex cardiac surgery (75% biventricular repairs) at Stollery Children’s Hospital, Edmonton, Alberta. We excluded children with chromosomal abnormalities. When children were 4–5 years of age, the parents completed the Adaptive Behavioral Assessment System II. Regression analysis was used to assess the association between multiple risk factors and each of the four continuous composite scores. Results: The mean scores for the practical domain and general adaptive composite score of the Adaptive Behavioural Assessment System were lower than the conceptual and social domains, with 13.3% of the children having a delay in the practical domain. There was a significant association between the general adaptive (p=0.003; 0.012), conceptual (p=0.0004; 0.042), social (p=0.0007; 0.028), and the practical (p=0.046; 0.003) domain composite scores with the mother’s education and preoperative plasma lactate, respectively. Conclusion: Maternal education may be a marker for the social context of children, and warrants societal attention to improve functional outcomes. Preoperative lactate as a potentially modifiable variable may warrant increased attention to early diagnosis and aggressive resuscitation of young infants with congenital heart disease.
16 - Neurological follow-up of infants treated with hypothermia
- from Section 2 - Clinical neural rescue
- Edited by A. David Edwards, Denis V. Azzopardi, Alistair J. Gunn
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- Book:
- Neonatal Neural Rescue
- Published online:
- 05 March 2013
- Print publication:
- 04 April 2013, pp 172-181
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Summary
Introduction
The theory, timelines, measures and services for the follow-up care of high-risk infants have been well described [1–3]. Amiel-Tison’s overview of the trajectory of child development after birth asphyxia in the term infant continues to give guidelines for the sequential diagnosis of abnormalities [4]. Although neural protection has been shown to lessen major disabilities among survivors [5], there is no indication that the approach to long-term follow-up should be altered. This chapter focuses on the neurological examination as a tool to assist and augment the neurodevelopmental and neurocognitive follow-up of neonates after hypothermia. Examples of assessment and rating tools are given. Many other measures would also be appropriate. Measures should be standardized for the population where the test is given and be the latest edition available. Where possible a comparison population should also be tested. Within each section, there is a discussion on early referral for intervention services to reduce adverse outcomes. The organization of this chapter is patterned after the timelines approach of Amiel-Tison [4] with less emphasis on individual disabilities than in other publications on outcome of term infants with perinatal asphyxia [6,7].
Defining the cohort
The focus of this book is on techniques to preserve neurological function in neonates compromised by perinatal asphyxia. By extension, follow-up should not only document outcomes but provide services to reduce the impact of the insult on limitations of function, activities and participation for each child [8]. Clarity of definition of diagnosis not only of the initial insult but of associated diagnoses will assist both outcomes research and service to the child and family [6]. For more than three decades the words hypoxic–ischaemic encephalopathy (HIE) in the term newborn suggested neonatal encephalopathy beginning within hours of intrapartum asphyxia where there was evidence of fetal distress (fetal heart rate abnormalities, meconium-stained amniotic fluid and depression at birth [4,6]. This definition did not preclude an earlier antepartum acute or chronic hypoxic event. However, reports generally excluded children with known chromosomal abnormalities, syndromes or malformations of the central nervous system and those with intracranial haemorrhage. In general, there has been little mention of excluding children from outcome studies after HIE who also had antenatal infections such as cytomegalovirus, or exposure to toxins such as maternally consumed illicit drugs. Such exclusions should be considered in the future.
Functional outcomes after neonatal open cardiac surgery: comparison of survivors of the Norwood staged procedure and the arterial switch operation
- Gwen Y. Alton, Gwen R. Rempel, Charlene M. T. Robertson, Christine V. Newburn-Cook, Colleen M. Norris
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- Journal:
- Cardiology in the Young / Volume 20 / Issue 6 / December 2010
- Published online by Cambridge University Press:
- 02 September 2010, pp. 668-675
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Background
Improvements in long-term survival of children undergoing the Norwood staged procedure and the arterial switch operation have resulted in the need to prepare these at-risk children for each stage of their developmental trajectory, including school readiness. This study describes and compares functional outcomes following the Norwood staged procedure and arterial switch operations.
MethodsThis prospective inception cohort study comprised a sample of 73 children (71% boys) who had the Norwood staged procedure (n = 28) or the arterial switch operation (n = 45) at the age of 6 weeks or younger at the Stollery Children’s Hospital, Edmonton, Alberta, between 2002 and 2005. We excluded children who had chromosomal abnormalities or cerebral palsy. When children were 18–24 months of age, parents completed the Adaptive Behavioral Assessment System II. Standard scores for the domains are mean 100, standard deviation (15); skill area scaled scores, 10 (3). Student’s t-test with Bonferonni correction was used to compare groups.
ResultsThis population has greater than four times the number of children delayed on the General Adaptive Composite than the normative group. Functional outcomes were similar in the two groups other than those of home living (Norwood: 8.8 (2.8) compared with arterial switch: 11.2 (3.1), t = 3.389, p = 0.001) and self-care (Norwood: 5.9 (3.5) versus arterial switch: 8.1 (2.6), t = 3.140, p = 0.002).
ConclusionThese survivors are at increased risk for delayed functional abilities. Self-care, necessary for independence and confidence as children reach school age, was particularly low in the Norwood group. Reasons for low self-care abilities require further study.