The School Age Child with Congenital Heart Disease

Boyle, Lynn; Kelly, Michelle M.; Reynolds, Kathryn; Conlan, Misty; Taylor, Felisha

doi:10.1097/nmc.0000000000000092

Cited by 7 publications

(8 citation statements)

References 1 publication

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“…professionals and researchers in paediatric cardiology have shown a growing interest in patient related outcomes (PROs), such as health-related quality of life (HRQoL) (3).…”

mentioning

confidence: 99%

Health-related quality of life in children with congenital heart disease aged 5 to 7 years: a multicentre controlled cross-sectional study

Abassi

Huguet

Picot

et al. 2020

Health Qual Life Outcomes

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Background In the context of tremendous progress in congenital cardiology, more attention has been given to patient-related outcomes, especially in assessing health-related quality of life (HRQoL) of patients with congenital heart diseases (CHD). However, most studies have mainly focused on teenagers or adults and currently, few HRQoL controlled data is available in young children. This study aimed to evaluate HRQoL of children with CHD aged 5 to 7 y.o., in comparison with contemporary peers recruited in school, as well as the factors associated with HRQoL in this population. Methods This multicentre controlled prospective cross-sectional study included 124 children with a CHD (mean age = 6.0 ± 0.8 y, 45% female) during their outpatient visit and 125 controls (mean age = 6.2 ± 0.8 y, 54% female) recruited at school. A generic paediatric HRQoL instrument was used (PedsQL 4.0). Results Self-reported HRQoL in children with CHD was similar to controls, overall (73.5 ± 1.2 vs. 72.8 ± 1.2, P = 0.7, respectively), and for each dimension. Parents-reported HRQoL was significantly lower in the CHD group than in controls. HRQoL was predicted by the disease severity and by repeated invasive cardiac procedures (surgery or catheterization). Conclusion HRQoL in young children with CHD aged 5 to 7 years old was good and similar to controls. This study contributed to the growing body of knowledge on HRQoL in congenital cardiology and emphasized the need for child and family support in the most complex CHD. Trial registration This study was approved by the institutional review board of Montpellier University Hospital (2019_IRB-MTP_02-19) on 22 February 2019 and was registered on ClinicalTrials.gov (NCT03931096) on 30 April 2019, https://clinicaltrials.gov/ct2/show/NCT03931096.

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“…professionals and researchers in paediatric cardiology have shown a growing interest in patient related outcomes (PROs), such as health-related quality of life (HRQoL) (3).…”

mentioning

confidence: 99%

Health-related quality of life in children with congenital heart disease aged 5 to 7 years: a multicentre controlled cross-sectional study

Abassi

Huguet

Picot

et al. 2020

Health Qual Life Outcomes

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“…These children may struggle with depression, anxiety, attentional problems, social cognition and relationships, with an increase of problems with age. Children with milder forms of CHD have lower prevalence of neurodevelopmental disabilities, while more complex cases such as hypo plastic left heart syndrome are associated with more developmental problems due to the minor brain injury from cardiovascular compromise [18].…”

Section: Developmental Outcomes In Children With Chdmentioning

confidence: 99%

Promoting Resilience in Families with Children with Congenital Heart Disease

2019

IJP

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Congenital heart disease (CHD) is the most common birth defect, affecting approximately 40,000 infants annually in the US [1]. CHD involves a variety of heart defects, with a wide spectrum from simple to moderate to complex. Due to advances in pediatric cardiology and cardiac surgery, life expectancy in these children has increased drastically over the past decades. Now 90% of infants diagnosed with CHD live well into adulthood [2]. Due to the increase in survival rates, attention has shifted towards the impact of CHD on psychological and cognitive functioning [3]. Children with CHD are at risk for neurodevelopmental and psychosocial problems related to operative factors. Children with CHD display lower cognitive functioning, and higher rates in behavioral, attentional and emotional problems. Increased parental stress also adds to the psychosocial issues experienced by these children. For this reason, psychological care needed to promote resiliency in this population. Incorporating psychological services into treatment protocols with children with CHD is beneficial and will improve behavioral and emotional functioning across their lifespan [4]. This paper will review the definitions of resiliency and Congenital Heart Disease, as well as the professional roles of people treating infants with CHD, the risk factors deterring resiliency, and the developmental outcomes in children with CHD. It will then examine some of the most common psychological interventions for children with CHD and chronic illness, including CBT and psychoeducational interventions, and family-based interventions that also include a psychoeducational component. I will conclude by discussing the value of this multidimensional approach and why it is the most effective intervention strategy to promote resiliency in children with CHD.

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“…In the past two decades, great advances in medical and surgical treatments for patients with congenital heart diseases (CHD) have signi cantly increased their life expectancy, and currently most children with CHD are expected to reach adulthood without any severe physical impairment (1,2). Consequently, patients, healthcare professionals and researchers in paediatric cardiology have shown a growing interest in patient related outcomes (PROs), such as health-related quality of life (HRQoL) (3).…”

Section: Introductionmentioning

confidence: 99%

Health-related quality of life in children with congenital heart disease aged 5 to 7 years: a multicentre controlled cross-sectional study

Abassi¹,

Huguet²,

Picot³

et al. 2020

Preprint

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Background In the context of tremendous progress in congenital cardiology, more attention has been given to patient-related outcomes, especially in assessing health-related quality of life (HRQoL) of patients with congenital heart diseases (CHD). However, most studies have mainly focused on teenagers or adults and currently, few HRQoL controlled data is available in young children. This study aimed to evaluate HRQoL of children with CHD aged 5 to 7 y.o., in comparison with contemporary peers recruited in school, as well as the factors associated with HRQoL in this population. Methods This multicentre controlled prospective cross-sectional study included 124 children with a CHD (mean age = 6.0 ± 0.8 y, 45% female) during their outpatient visit and 125 controls (mean age = 6.2 ± 0.8 y, 54% female) recruited at school. A generic paediatric HRQoL instrument was used (PedsQL 4.0). Results Self-reported HRQoL in children with CHD was similar to controls, overall (73.5 ± 1.2 vs. 72.8 ± 1.2, P = 0.7, respectively), and for each dimension. Parents-reported HRQoL was significantly lower in the CHD group than in controls. HRQoL was predicted by the disease severity and by repeated invasive cardiac procedures (surgery or catheterization). Conclusion HRQoL in young children with CHD aged 5 to 7 years old was good and similar to controls. This study contributed to the growing body of knowledge on HRQoL in congenital cardiology and emphasized the need for child and family support in the most complex CHD. Trial registration: This study was approved by the institutional review board of Montpellier University Hospital (2019_IRB-MTP_02–19) on 22 February 2019 and was registered on ClinicalTrials.gov (NCT03931096) on 30 April 2019, https://clinicaltrials.gov/ct2/show/NCT03931096.

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The School Age Child with Congenital Heart Disease

Cited by 7 publications

References 1 publication

Health-related quality of life in children with congenital heart disease aged 5 to 7 years: a multicentre controlled cross-sectional study

Health-related quality of life in children with congenital heart disease aged 5 to 7 years: a multicentre controlled cross-sectional study

Promoting Resilience in Families with Children with Congenital Heart Disease

Health-related quality of life in children with congenital heart disease aged 5 to 7 years: a multicentre controlled cross-sectional study

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