The challenging problem of obese and overweight children is an ongoing concern for healthcare providers. The Endocrine Society is an international organization that provides clinical practice guidelines. These guidelines for the prevention, assessment and treatment of pediatric obesity are not easily applied for many children, including kids with Down Syndrome. Many of the treatment approaches have a core cognitive component, or require physical exercise approaches. This is simply not suitable for children and adolescents with Down Syndrome, who also tend to suffer from physical limitations. A main recommendation, where there are barriers to weight reduction after intervention, is genetic testing. Down Syndrome is a known genetic issue, but the guidelines do not provide further insights. Overweight and obese children face higher risks of type 2 diabetes, hypertension and cardiovascular issues. Further, there are specific challenges which face overweight pediatric patients with Down Syndrome, including sleep apnea and the progression of cardiac problems.
The state of the evidence
Over the past thirty years, few studies, less than fifty, have been conducted in relation to obesity and overweight pediatric patients with Down Syndrome. Despite varying definitions of “overweight” and “obese”, the reported prevalence of obesity in the pediatric Down Syndrome population was high, between 23% to 70%. Contributing factors identified in the research were increased levels of leptin, decreased resting metabolism, dietary issues, and sedentary lifestyles. There was a positive correlation between unhealthy weight, sleep apnea, high cholesterol, hyperinsulinemia, and gait disorder. No effective interventions have been identified, and the problem has been persistent despite efforts. More research is needed to understand the risks and progression of weight gain in children with Down Syndrome in order to identify and develop more effective interventions for this persistent problem.
Advancing evidence and practice
Most of the evidence compiled in the current research base has not resulted in definitive findings. Small sample sizes and more rigorous approaches are needed to create high quality evidence to promote better practice. It is possible to achieve this using tools such as the Johns Hopkins Nursing Evidence-Based Practice (EBP) Model. This model provides a simplified EBP process which is focused on results by identifying the specific practice question. Next, the relevant evidence that is needed is defined, and the plan of research is translated into action. A hierarchy of the levels of evidence provides for understanding the position of a topic within the knowledge base. The highest level of evidence is the systematic review of high quality random controlled trials at multiple sites with proof of reliability, requiring a significant volume of research on a specific issue.
Call to action
The opportunity is for researchers, especially graduate students in nursing seeking their PICOT or doctoral practical question, to address the gap. This is a vulnerable population, with challenges involved in data collection. It is true that this can mean greater difficulties in seeking approval from the ethical review board of an institution, and with many graduate students paying by the term to complete their dissertation or project, this is a great barrier to taking on this challenge. Support would come in the form of professional data collection by researchers to provide for others to advance insights and treatment options. This is a call to action for greater attention to the increased global incidence of overweight and obese status of children and adolescents with intellectual disabilities generally, and Down Syndrome specifically.
Dive in to the research
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- Bertapelli, F., Pitetti, K., Agiovlasitis, S., & Guerra-Junior, G. (2016). Overweight and obesity in children and adolescents with Down syndrome—prevalence, determinants, consequences, and interventions: a literature review. Research in developmental disabilities, 57, 181-192. doi: 10.1016/j.ridd.2016.06.018 https://www.sciencedirect.com/science/article/abs/pii/S0891422216301433?via%3Dihub
- Dang, D., & Dearholt, S. L. (2017). Johns Hopkins nursing evidence-based practice: Model and guidelines. Sigma Theta Tau. doi: 10.7748/nm.19.7.8.s3 https://pubmed.ncbi.nlm.nih.gov/27741821/
- Hsieh, A., Gilad, A., Wong, K., Cohen, M., & Levi, J. (2019). Obstructive sleep apnea in children with Down syndrome: screening and effect of guidelines. Clinical pediatrics, 58(9), 993-999. doi: 10.1177/0009922819845333 https://pubmed.ncbi.nlm.nih.gov/31030547/
- Styne, D. M., Arslanian, S. A., Connor, E. L., Farooqi, I. S., Murad, M. H., Silverstein, J. H., & Yanovski, J. A. (2017). Pediatric obesity—assessment, treatment, and prevention: an Endocrine Society Clinical Practice guideline. The Journal of Clinical Endocrinology & Metabolism, 102(3), 709-757. doi: 10.1210/jc.2016-2573 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6283429/?report=reader