The Feasibility of Using Electronic Health Data for Research on Small Populations. Health and health care issues


Among children with various developmental disabilities, autism has been found associated with the highest levels of health and functional impairment indicators. Over 95 percent of children with autism also have co-occurring conditions such as attention deficit disorder, attention deficit-hyper activity disorder, learning disability, mental retardation, stuttering, and other developmental delays.118 Children with autism are also at elevated risk for depression, anxiety, and behavioral problems,119 often as a result of difficulty being understood or bullying.120

Children with ASDs are also more likely than other children to be obese and to have a variety of conditions—respiratory disorders, food and skin allergies,121 epilepsy, schizophrenia, bowel disorders, cranial anomalies, type 1 diabetes, muscular dystrophy, and sleep disorders.122 As a result, children with ASDs use more health care services, therapy, counseling, and medication than children without ASDs.123, 124 Prevalence of prescription medications for children with ASD is high: surveys indicate one-half to two-thirds are prescribed at least one medication of any type, and about 45 percent prescribed at least one psychotropic medication. The most commonly prescribed psychotropic medications are antidepressants, stimulants, and antipsychotics.125

The significant amount of care needed for many children with ASDs means many of their parents have needed to reduce or stop work to provide care, spending an average of 10 hours per week providing or coordinating care. As a result, families of children with ASDs are more likely to report financial problems and to need additional income to support their child’s medical care compared to families with children with other special health care needs that do not involve emotional, developmental, or behavioral problems. Among children with special health care needs, children with ASD were much more likely to have unmet health care needs for specific health care services and family support services. Having a medical home has been found to help reduce the financial burden on families of children with ASDs.126 However, children with ASDs are less likely than children without ASDs to receive care within a medical home.127

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