Tag: care

First Large-Scale Study of Universal Screening for Autism Raises Critical Questions about Accuracy, Equity

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Researchers urge continued screening for all toddlers, while recommending changes to M-CHAT screening method to improve accuracy, address disparities

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Newswise — Philadelphia, September 27, 2019 –

In the first large, real-world study of universal screening for autism spectrum disorder (ASD) in toddlers, researchers at Children’s Hospital of Philadelphia (CHOP) have found that the most widely used and researched screening tool is less accurate than shown in previous studies conducted in research laboratory settings. The new study also revealed significant disparities in detecting early autism symptoms in minority, urban and low-income children. The findings were published online today in the journal Pediatrics.

The American Academy of Pediatrics (AAP) recommends screening all toddlers for ASD at their 18- and 24-month primary care check-ups using the Modified Checklist for Autism in Toddlers with Follow-Up (M-CHAT/F), a two-stage parent survey to determine whether a child may have autism, with the follow-up designed to eliminate false positives. However, most studies to evaluate the accuracy of the M-CHAT/F have been conducted in research settings rather than in real-world clinical settings. Therefore, very little was known about screening in the recommended primary care setting, nor about longer-term outcomes for children who screened negative on the M-CHAT/F. The CHOP study is the first to look at outcomes of truly universal screening in a real-world primary care setting.

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“As part of a large pediatric network implementing universal screening, we found ourselves in a unique position to find answers to critical questions about the accuracy of the M-CHAT, and to determine how many children are missed by early, universal screening,” said lead author Whitney Guthrie, PhD, a clinical psychologist specializing in early diagnosis at CHOP’s Center for Autism Research. “Early intervention has been shown to improve outcomes, potentially into adulthood. We know that early and accurate screening and diagnosis is the crucial first step in helping children access those effective, autism-specific therapies.”

The CHOP research team studied the electronic health records (EHR) of 25,999 patients screened in primary care using the M-CHAT/F between the ages of 16 and 26 months, and systematically followed these children until 4 through 8 years of age using the EHR. Ninety-one percent of these children were screened using the M-CHAT/F, meaning that nearly universal screening of all children in primary care was achieved.

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The study showed that the M-CHAT/F detected only about 40% of children who went on to be diagnosed with ASD. However, children who screened positive were diagnosed seven months earlier than those who screened negative, suggesting that early screening may facilitate early intervention. Overall, 2.2% of children in the study were ultimately diagnosed with ASD, which is consistent with the Centers for Disease Control and Prevention (CDC) estimates nationally.

“Although our findings reveal significant shortcomings in current screening tools, we want to be clear that we are not recommending that pediatricians stop universal screening,” said Guthrie. “Instead, clinicians should continue to screen using the M-CHAT/F, while being aware that this screening tool does miss some children with ASD. Any clinical or parental concerns should be taken seriously, and warrant continued surveillance even if a child screens negative on the M-CHAT/F. And of course, a screen positive on the M-CHAT/F warrants referral so that children with ASD can be diagnosed and receive early intervention.

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“Pediatricians should also be aware of disparities in screening practices and results in children of color and from low-income backgrounds.”

The CHOP study found that the 9% of children who did not receive screening at 18 or 24 months were disproportionately from racial minority groups; from non-English speaking households; and from households with lower median income and who receive Medicaid. When screening was administered, these same children were more likely to receive a false positive result. The M-CHAT was also less accurate in girls than in boys.

“Persistent racial and economic disparities in autism screening and diagnosis are a cause for great concern, and are consistent with previous research showing that black and Hispanic children tend to be diagnosed years later than white children,” said co-author Kate Wallis, MD, MPH, a developmental pediatrician and researcher at CHOP’s PolicyLab who is also studying disparities in referrals for autism services. “This study revealed important limitations and provides us with new knowledge that we can use to make critical improvements to autism screening tools and screening processes, so pediatricians can properly detect and support more children with autism and reduce disparities in diagnosis and care.”

Guthrie et al, “Accuracy of Autism Screening in a Large Pediatric Network.” Pediatrics, online 27 September 2019. DOI: 10.1542/peds.2019-0925.

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About Children’s Hospital of Philadelphia: Children’s Hospital of Philadelphia was founded in 1855 as the nation’s first pediatric hospital. Through its long-standing commitment to providing exceptional patient care, training new generations of pediatric healthcare professionals, and pioneering major research initiatives, Children’s Hospital has fostered many discoveries that have benefited children worldwide.  Its pediatric research program is among the largest in the country.  In addition, its unique family-centered care and public service programs have brought the 564-bed hospital recognition as a leading advocate for children and adolescents. For more information, visit http://www.chop.edu

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Autism CARES Act of 2019

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WASHINGTON, Sept. 19, 2019 /PRNewswire/ —

Autism Speaks applauds the final passage of the Autism Collaboration, Accountability, Research, Education and Support Act of 2019 (Autism CARES Act of 2019) (H.R.1058). The bill now goes to the President’s desk for his signature. Autism CARES is the foundation of the federal government’s efforts around autism, serving as the primary source of federal funding for autism research, services, training and monitoring.

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The bipartisan, bicameral legislation received broad support with 173 house members and 41 senators having signed on as co-sponsors of the legislation. Autism Speaks is grateful to have worked hand-in-hand with the measure’s congressional champions and advocates across the country in order to ensure support for the life-enhancing research and high-quality services authorized under the Autism CARES Act.

“Autism Speaks, alongside the millions of people with autism and their families, celebrates the passage of the Autism CARES Act of 2019,” said Autism Speaks President and CEO Angela Geiger. “Thanks to the leadership of Senator Bob Menendez, Senator Michael Enzi, Congressman Chris Smith and Congressman Mike Doyle, this legislation ensures sustained funding to better support people with autism across the spectrum and at every stage of life.”

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The CDC estimates that 1 in 59 U.S. children have autism, according to surveillance and prevalence studies authorized by Autism CARES. A recent study by Autism Speaks researchers also found that children with autism have nearly four times higher odds of having unmet health care needs compared to children without disabilities. “We know autism is a lifelong condition and these unmet needs can and often do continue into adulthood,” said Autism Speaks Senior Vice President of Advocacy Stuart Spielman. “The Autism CARES Act of 2019 not only renews federal support for existing autism research and programs but also expands these activities, placing an increased emphasis on reducing health disparities and improving services throughout the life span.”

Under the authority of the Autism CARES Act of 2014 and predecessor legislation, over $3.1 billion has been dedicated for autism to the National Institute of Health (NIH), the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration (HRSA) since 2006. The Autism CARES Act of 2019 authorizes more than $1.8 billion in funding over the next five years. This funding primarily supports autism research grants awarded by NIH which advance the scientific understanding of autism, expand efforts to develop treatments for medical conditions often associated with autism and address the needs of people affected by it. The NIH Autism Centers of Excellence also fosters collaboration within and among research centers, increasing the power and efficiency of their efforts.

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The Autism CARES Act of 2019 also reauthorizes and supports numerous programs across the country focused on ensuring high-quality services for people with autism. Through 52 Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND) programs and 12 Developmental Behavioral Pediatric Training Programs, the legislation has and will continue to enhance education, early detection and intervention activities at HRSA through the training of future leaders and healthcare professionals. Likewise, collaborative programs such as the Autism Intervention Research Network on Physical Health (AIR-P) will continue to help translate research into improved care and tangible resources for families and clinicians.

Under Autism CARES, the Interagency Autism Coordinating Committee (IACC) is empowered to advise on federal autism activities, and tasks the federal government with surveying and reporting to Congress on the current landscape of autism services. The 2014 legislation resulted in a report to Congress on young adults with autism and the challenges related to transitioning from school-based services to those available during adulthood. The 2019 legislation mandates another report, this time focused on the health and well-being of individuals with autism spectrum disorder, emphasizing their needs throughout the life span.

Autism Speaks looks forward to working with Congress and its community partners to deliver on the promise of Autism CARES through renewed appropriations for these programs. 

SOURCE Autism Speaks