Physical and neurodevelopmental outcomes in children with single-ventricle circulation

Davidson, Joseph; Gringras, Paul; Fairhurst, Charlie; Simpson, John

doi:10.1136/archdischild-2014-306449

Cited by 24 publications

(20 citation statements)

References 38 publications

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“…Stronger links between the specialist and non-specialist palliative care providers enable better choices, experiences and outcomes 10. In particular, the increasing recognition of adverse neurodevelopmental outcomes in children with CHD33 means that paediatric disability services are playing an evermore crucial role in the lives of many CHD survivors.…”

Section: Introductionmentioning

confidence: 99%

The importance of early involvement of paediatric palliative care for patients with severe congenital heart disease

et al. 2016

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Growing numbers of patients with severe congenital heart disease (CHD) are surviving into late childhood and beyond. This increasingly complex patient group may experience multiple formidable and precarious interventions, lifelong morbidity and the very real risk of premature death on many occasions throughout their childhood. In this paper, we discuss the advantages of a fully integrated palliative care ethos in patients with CHD, offering the potential for improved symptom control, more informed decision-making and enhanced support for patients and their families throughout their disease trajectory. These core principles may be delivered alongside expert cardiac care via non-specialists within pre-existing networks or via specialists in paediatric palliative care when appropriate. By broaching these complex issues early-even from the point of diagnosis-an individualised set of values can be established around not just end-of-life but also quality-of-life decisions, with clear benefits for patients and their families regardless of outcome.

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Section: Introductionmentioning

confidence: 99%

The importance of early involvement of paediatric palliative care for patients with severe congenital heart disease

et al. 2016

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“…(11) Cardiothoracic surgeons performed no developmental surveillance. This is considered a missed opportunity, as they are ideally situated to identify those children at high risk for developmental delays due to cardiac surgery-related factors such as prolonged cardiopulmonary bypass, (18,19) the need for cardiopulmonary resuscitation, (20) post-operative seizures, (21) and prolonged postoperative hospital length of stay. (10) Risk-stratification serves to identify those children with CHD considered to be at high risk for developmental delay, and who should be referred directly for formal developmental evaluation.…”

Section: Discussionmentioning

confidence: 99%

“…Children were rarely referred for developmental evaluation as scholars or adolescents. This is of concern, as one in three children with CHD have educational concerns, (7,21) and up to 50% of school-aged children are reported to require intervention therapies and remedial educational services. (6,7,28) Around a third of practitioners (n=6) did not refer children for formal developmental evaluation if they were already accessing intervention therapies.…”

Section: Children With Chdmentioning

confidence: 99%

“…times more likely to present with inattention and hyperactivity than the general population. (2,7,19,21) psychologists are a very limited resource in the healthcare sector globally. (31,32) Perceived barriers to accessing intervention therapies included the distance families had to travel to access therapy, the time required from parents to take their child for therapy, the time required to adhere to the prescribed home exercise programmes, and the loss of income suffered by parents who had to take their children to therapy appointments.…”

Section: Children With Chdmentioning

confidence: 99%

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Neurodevelopmental evaluation and referral practices in children with congenital heart disease in central South Africa

Smith¹,

Nel²,

Marais³

et al. 2019

SAHJ

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The guideline is not context-specific and serves as a universal tool to facilitate clinical decision-making based on best practice evidence. (4,11) The guideline uses a riskstratification approach with a clinical algorithm, including a combination of developmental surveillance, screening and evaluation aimed at the early identification of developmental delays. (1,2,4,10) By extension, the successful implementation of the guideline also results in the appropriate referral of children with developmental delays to intervention therapies, including physiotherapy, occupational therapy and speech therapy, as well as for psychological and educational support-to optimise their developmental outcome. (1,12-14

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“…Staged surgical palliation, such as a Norwood procedure, improves survival, but concerns remain about outcomes. A retrospective single‐centre study from Evelina London Children's Hospital studied outcomes in 58 HLHS patients born between 1995 and 2003 who received palliative surgery . Outcomes were reported to outcomes in 44 non‐HLHS patients with single ventricle physiology.…”

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confidence: 99%

Hypoplastic left heart syndrome outcomes

2015

J Paediatrics Child Health

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Children born preterm more likely to be bulliedVery low birth weight (VLBW) infants are known to be at increased risk of long-term adverse neurodevelopmental and behavioural outcomes, and are known to have problems with social relationships. Personality, however, has hardly been studied. The Bavarian Longitudinal Study enrolled 628 infants born in 1985/6 in Germany at <32 weeks' gestation or weighing <1500 g and 308 full-term controls. After 26 years, 200 VLBW and 197 controls completed questionnaires with two items on each of the Big Five Inventory.1 The big five personality traits are introversion, neuroticism, openness to experience, agreeableness and conscientiousness. Adults born preterm were significantly more likely than controls to report being socially withdrawn with features of neuroticism (being tense or anxious), introversion and decreased risk-taking. These personality traits are known to be associated with an increased risk of being bullied. In a separate study, children from the Bavarian study and from a comparable UK study (EPICure) were more likely to be bullied than full-term comparison children.2 Children who were bullied were more likely to develop emotional problems. The simple message was that health professionals should routinely ask the parents of very preterm infants about their peer relationships and whether or not they are being bullied.

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Physical and neurodevelopmental outcomes in children with single-ventricle circulation

Abstract: Within a group of young people with complex congenital heart disease, those with HLHS are likely to have worse physical, psychological and educational outcomes.

Cited by 24 publications

References 38 publications

The importance of early involvement of paediatric palliative care for patients with severe congenital heart disease

The importance of early involvement of paediatric palliative care for patients with severe congenital heart disease

Neurodevelopmental evaluation and referral practices in children with congenital heart disease in central South Africa

Hypoplastic left heart syndrome outcomes

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