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There are more children with special health care conditions today because of the increased survival rates of children with complex conditions.1 The severity of pediatric chronic illness, as measured by increased mortality of children with chronic conditions, has increased as well, with 34% of childhood deaths attributable to non–injury related chronic conditions reported in 2001, compared with 24% in 1981.2 Children with chronic conditions represent an increasing proportion of hospitalized patients, because of the increase in their prevalence, the increase in severity of their conditions, and a decrease in admissions for acute conditions (as a result of increased prevention and outpatient management of acute conditions). Demand for care of chronic conditions in the ambulatory setting has also risen with increasing rates and recognition of asthma, obesity, attention deficit hyperactivity disorder, other mental health conditions, and many unclassified complex chronic conditions. Gaps in primary care systems for chronic illness, such as the lack of a “medical home” are compounded by reduced health care coverage or access, leaving many families burdened to manage complex conditions with little support.


The psychological and behavioral responses of the family and child to a child’s chronic illness may manifest as one of the more important factors contributing to the daily functioning of the child and family unit; those affected often look to their pediatrician for guidance. The role of the pediatrician in such guidance will change over the course of a child’s chronic condition, with variance depending on the nature of the condition, the functional impairment realized by the child, the adjustment of the child, the parents, the siblings, and to some extent the accommodations provided in the environment of the school and community.


Understanding the potential psychological and behavioral difficulties in children and their families is important for the pediatrician who is overseeing the medical care of the child. Anticipating known risks for psychological and behavioral dysfunction provides care teams the opportunity to address issues early and to offer directed resources for support.


Although children are said to be resilient and often respond to adverse conditions with good adjustment, children with chronic illness are 2 to 2.4 times more likely to develop a diagnosable psychiatric or behavioral disorder3; children with epilepsy are 3 to 6 times as likely to experience psychopathology as the general pediatric population.4,5 The most common type of psychological or behavioral difficulty seen in chronically ill children is poor adjustment, resulting in difficulties in interactions with peers, low self-esteem, display of externalizing symptoms (such as oppositional behavior), and the experience of internalizing symptoms (such as anxiety). Adjustment to illness impacts adherence to treatment and influences the perception of quality of life for the child and family.


The assessment and management of care of children with chronic conditions are often parsed to a specific subspecialty clinic, determined by the medical problem that is viewed as dominant or of interest to the ...

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