School-Age Test Proficiency and Special Education After Congenital Heart Disease Surgery in Infancy

BackgroundConflicting results have been reported regarding employment status and work ability in adults with congenital heart disease (CHD). Since this is an important determinant for quality of life, we assessed this in a large international adult CHD cohort.MethodsData from 4028 adults with CHD (53% women) from 15 different countries were collected by a uniform survey in the cross‐sectional APPROACH International Study. Predictors for employment and work limitations were studied using general linear mixed models.ResultsMedian age was 32 years (IQR 25‐42) and 94% of patients had at least a high school degree. Overall employment rate was 69%, but varied substantially among countries. Higher education (OR 1.99‐3.69) and having a partner (OR 1.72) were associated with more employment; female sex (OR 0.66, worse NYHA functional class (OR 0.67‐0.13), and a history of congestive heart failure (OR 0.74) were associated with less employment. Limitations at work were reported in 34% and were associated with female sex (OR 1.36), increasing age (OR 1.03 per year), more severe CHD (OR 1.31‐2.10), and a history of congestive heart failure (OR 1.57) or mental disorders (OR 2.26). Only a university degree was associated with fewer limitations at work (OR 0.62).ConclusionsThere are genuine differences in the impact of CHD on employment status in different countries. Although the majority of adult CHD patients are employed, limitations at work are common. Education appears to be the main predictor for successful employment and should therefore be encouraged in patients with CHD.

Section: Predictors For Employment and Limitations At Workmentioning

confidence: 89%

Education as important predictor for successful employment in adults with congenital heart disease worldwide

Sluman

Apers

Sluiter

et al. 2019

“…Children with CHD, compared to those without, are also more likely to receive special education services, have lower academic achievement scores, and report more school absenteeism . However, less is known about how functional limitations are associated with educational outcomes .…”

Section: Discussionmentioning

confidence: 99%

“…Recent studies have documented that children with congenital heart disease (CHD) have a higher prevalence of cognitive and motor limitations compared to their peers . Additionally, children with CHD are more likely to receive special education services and are at higher risk for grade retention . The etiology of these limitations is most likely multifactorial and may be due to genetic or chromosomal abnormalities, abnormalities in fetal brain development secondary to altered cerebral circulation in utero, as well as perioperative factors including single ventricle physiology, hospital length of stay, and duration of cardiopulmonary bypass …”

Section: Introductionmentioning

confidence: 99%

“…Less is known about how functional limitations experienced by school‐aged children and adolescents with CHD may affect their education and participation in extracurricular activities . There are few population‐based estimates of the percentage of children and adolescents with CHD who experience functional limitations or need special education services . Therefore, using the National Survey of Children with Special Health Care Needs (NS‐CSHCN) we examined the prevalence of functional limitations among children with special healthcare needs (CSHCN) with diagnosed heart problems, including CHD.…”

Section: Introductionmentioning

confidence: 99%

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Functional limitations and educational needs among children and adolescents with heart disease

Farr

Downing

Riehle‐Colarusso

et al. 2018

Objective: To examine how cognitive and motor limitations in children with heart disease are associated with education and participation in extracurricular activities. Design: Using 2009–2010 parent-reported data from the National Survey of Children with Special Health Care Needs (NS-CSHCN), we examined prevalence of five functional limitations (learning/ concentration, communication, self-care, gross motor skills, and fine motor skills) by diagnosed heart disease status using chi-square tests and multivariable logistic regression. Among CSHCN with heart disease, we examined the associations between severity of each functional limitation and missing ≥11 days of school in the past year, receiving special education services, and interference with extracurricular activities. Results: CSHCN with heart disease (n = 1,416), compared to CSHCN without (n = 28,385), more commonly had “a lot” of difficulty in the five functional areas (P < .01; adjusted odds ratios: 1.8–3.3). Among CSHCN with heart disease, “a lot” of difficulty with learning/concentration was most common (35%), followed by communication (21%), self-care (14%), gross motor skills (12%), and fine motor skills (10%). Among CSHCN with heart disease, compared to those without, respectively, 27% and 15% missed ≥11 days of school, 45% and 29% received special education services, and 49% and 29% experienced interference with extracurricular activities (P < .01 for all). Level of difficulty with the five functional areas was associated with receipt of special education services and participation in extracurricular activities (P < .001). Conclusion: These results support the American Heart Association recommendations to screen children with congenital heart disease for age-appropriate development and provide services when needed.

“…It has been estimated that up to one‐half of all children with congenital heart disease (CHD) may have subsequent, usually subtle, neurodevelopmental impairment. While the neurodevelopmental and academic achievement outcomes for these children at both preschool and school ages are not related to the underlying cardiac anatomy or type of surgery, children with a history of CHD are 50% more likely to require special education services than those without CHD . Studies performed in the general population report that only 10% of children between 9 and 24 months of age with developmental delay receive early intervention and therapeutic services, and less than 30% receive interventions prior to school entry .…”

Section: Introductionmentioning

confidence: 99%

Ancillary referral patterns in infants after initial assessment in a cardiac developmental outcomes clinic

Monteiro

Serrano

Tsang

et al. 2019

Objective Neurodevelopmental impairment is common after surgery for congenital heart disease (CHD) in infancy. While neurodevelopmental follow‐up of high‐risk patients has increased, the referral patterns for ancillary services following initial evaluation have not been reported. The aim of this study is to describe the rates and patterns of referral at the initial visit to our outcomes clinic of patients who underwent surgery for CHD during infancy. Outcomes Measures The Cardiac Developmental Outcomes Program clinic at Texas Children’s Hospital provides routine longitudinal follow‐up with developmental pediatricians and child psychologists for children who required surgery for CHD within the first 3 months of life. Demographic, diagnostic, and clinical data, including prior receipt of intervention and referral patterns at initial presentation, were abstracted from our database. Results Between April 2013 and May 2017, 244 infants under 12 months of age presented for initial evaluation at a mean age of 7 ± 1.3 months. At presentation, 31% (76/244) were referred for either therapeutic intervention (early intervention or private therapies), ancillary medical services, or both. Referral rates for low‐risk (STAT 1‐3) and high‐risk (STAT 4‐5) infants were similar (28 vs. 33%, P = .48). Referrals were more common in: Hispanic white infants (P = .012), infants with non‐cardiac congenital anomalies (P = .001), history of gastrostomy tube placement (P < .001), and infants with prior therapy (P = .043). Infants of non‐English speaking parents were three times more likely to be referred (95% CI = 1.5, 6.4; P = .002). Conclusions At the time of presentation, nearly 1 in 3 infants required referral. Referral patterns did not vary by traditional risk stratification. Sociodemographic factors and co‐morbid medical conditions increased the likelihood of referral. This supports the need for routine follow‐up for all post‐surgical infants regardless of level of surgical complexity. Further research into the completion of referrals and long‐term referral patterns is needed.