A study from investigators at MassGeneral Hospital for Children (MGHfC) found that African-American or Hispanic children diagnosed with autism were significantly less likely than white children to have received subspecialty care or procedures related to conditions that often accompany autism spectrum disorders. While previous studies have documented that minority children with autism tend to be diagnosed at a later age than white children, this report – which will appear in the July issue of Pediatrics and has been released online – is the first to describe disparities in the use of specialty services in gastroenterology, psychiatry or psychology.
"We think there are probably many reasons for these differences," says Sarabeth Broder-Fingert, MD, of MGHfC and the Center for Child and Adolescent Health Research and Policy at Massachusetts General Hospital (MGH), lead author of the report. "Many autism-related medical symptoms – including gastrointestinal issues like constipation and neuropsychiatric issues such as anxiety or sleep disorders – are not well understood, so doctors may not realize children are having those symptoms."
The research team reviewed records for more than 3,600 patients ages 2 to 21 with a diagnosis of autism who received care at the MGH or its affiliated health centers from 2000 through 2010. Data on each clinical visit were analyzed, with particular attention to specialty care in gastroenterology, psychiatry and psychology and to procedures including endoscopy, ultrasound, EEG, brain imaging and sleep studies. Among the patients identified, 81 percent were white, 5 percent were African-American and 7 percent, Hispanic.
The analysis revealed that minority children were significantly less likely to have received either subspecialty care or procedures, with some of the most significant differences in gastroenterology services, which were accessed by almost 14 percent of white children but only 9 percent of African-American children and 10 percent of Hispanic children. Minority children were less likely to have received an endoscopy or colonoscopy, and Hispanic children were much less likely to have had sleep studies or other neurological or neuropsychiatric tests.
"We know that many children with autism have gastrointestinal or sleep issues, and if those problems are not being diagnosed or treated, they can lead to additional behavior difficulties that can inhibit development," says Broder-Fingert, who is a clinical fellow in Pediatrics at Harvard Medical School. "Combining the challenges of accessing specialty services for any child with autism, regardless of race or ethnicity, with the recognized difficulties minority communities have accessing medical care in general can lead to these major disparities in the use of services.
"It's going to be important to see whether these differences in service use lead to differences in medical and behavioral outcomes, and we need to understand more about why this is happening," she adds. "We hope this work can help doctors be aware of these disparities and be sure to look out for patients – especially minority patients – who might need specialty services, and that we can help parents of children with autism be aware that these conditions may occur in their children and ask their doctors for assistance."
Additional co-authors of the Pediatrics report are Amy Shui, Daniel Kurowki, MPH, and senior author James Perrin, MD, MGHfC and MGH Center for Child and Adolescent Health Research and Policy; and Christian Pulcini, MEd, MPH, Tufts University School of Medicine. The study was supported by grants from the Nancy Lurie Marks Foundation and Autism Speaks.
Massachusetts General Hospital, founded in 1811, is the original and largest teaching hospital of Harvard Medical School. The MGH conducts the largest hospital-based research program in the United States, with an annual research budget of more than $775 million and major research centers in AIDS, cardiovascular research, cancer, computational and integrative biology, cutaneous biology, human genetics, medical imaging, neurodegenerative disorders, regenerative medicine, reproductive biology, systems biology, transplantation biology and photomedicine. In July 2012, MGH moved into the number one spot on the 2012-13 U.S. News & World Report list of "America's Best Hospitals."