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

Abstract

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.

Pediatric Heart Conditions: What Do Occupational Therapists Need to Know?

“…Those that care for a child with a heart condition are aware of the toll that the illness has on the interruption of normal development during a child's formative years, which often necessitates skilled intervention. Parents of children diagnosed with heart defects at birth note delays and deficits that impact typical childhood roles and occupations (Farr et al, 2018). Per the Morbidity and Mortality Weekly Report, nearly 60% of the children with diagnosed pediatric heart conditions have special health care needs, inclusive of physical or speech therapy (Chen et al, 2018).…”

Proposed method for evaluation and categorization of functional capacity of children, adolescents, and adults with cardiac diseases to bring them in existing social justice system by creating the cardiac disability criteria

“…The operated patients may also have suboptimal FC in the presence of residual defects, ventricular dysfunction, chronotropic incompetence, tachyarrhythmia, heart block, SAH, PAH, PVH, prosthesis implantation, post-cardiac transplant deconditioning, IE, and co-existing multi-organ dysfunction [2,[22][23][24][25][28][29][30][31][32][33][34][35][36][37][38][39][40]. These patients need to undergo evaluation of cardiac disability based on a scoring system utilizing existing subjective and objective parameters, for the assessment of functional capacity [11][12][13]20]. DALY disability-adjusted life-year, UI uncertainty interval Heart disease categories, groups A, B, and C (Tables 1, 5, 6, 7, 8, 9) Inclusion of cardiac diseases in the HDC Gr A, B, and C is based on hemodynamic significance, type of HD, natural history, amenability to intervention, and overall outcome [2, 3, 5-7, 9, 13, 22-54].…”

“…Need for a multidisciplinary approach for patients going through cardiac rehabilitation programs [3,4,11,12,26,27] A post-intervention, cardiac rehabilitation program improves long-term survival, quality of life, and psychological wellbeing [68][69][70]. These programs must have a cost-effective multidisciplinary approach to handle the multiple issues like treatment of co-morbid factors, patient's (and parent's) education, physiotherapy, neuro-developmental growth, psychiatric problems, speech, visual and hearing impairment, and underlying genetic syndromes [69,70].…”

“…Due to the increasing availability of advanced and refined cardiac procedures, there is a decline in overall cause-specific mortality rates for all ages by at least 71% [3]. About 40-60% survivors may have suboptimal functional capacity (FC) even after interventions, requiring lifelong expert consultation, medical support, or multiple re-interventions [4][5][6][7][8][9][10][11]. These requirements would then need further scrutinization for cost of care, resource utilization, and quality of life in terms of physical as well as the psychosocial stress [1][2][3][4][5][6][7][8][9][10][11].…”

Mediating effects of exercise capacity on the association between physical activity and health‐related quality of life among adolescents with complex congenital heart disease

“…Generally, poor HRQOL in children and adolescents is associated with a reduced likelihood to develop normally and mature into healthy adults (Riley et al, ). Notably, CHD adolescent groups with growth and development problems during childhood often suffer from an array of functional, psychological, and social problems, including physical inactivity (Müller et al, ), disease‐related stigma (Sable et al, ), depression (Benderly et al, ), learning difficulties (Farr, Downing, Riehle‐Colarusso, & Abarbanell, ), and associated school maladaptation (Shillingford et al, ). Accordingly, HRQOL in this patient population is increasingly used to evaluate the overall effectiveness of treatment outcomes (Uzark et al, ).…”