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Healthcare accessibility is a hot issue for healthcare providers (HCPs) across the U.S. Many of these efforts are focused on rural and elderly patient populations, such as encouraging the widespread implementation of telehealth to improve care access. Healthcare industry outsiders, like Uber and Lyft, are also partnering with hospitals and care facilities to assist patients with limited options for transportation.
There are many patient populations that could benefit from additional accessibility initiatives – including patients on the autism spectrum.
Autism spectrum disorder (ASD) is a neurological variation affecting roughly one percent of the U.S. population, and is classified as a developmental disability. The terms “autistic” and “autism spectrum” are other inclusive terms used to refer to those affected by ASD. Many people on the autism spectrum share characteristics specific to the condition, including heightened sensory sensitivity, “narrow but deep” knowledge of special interests, and difficulty in understanding and participating in social interactions, among others.
Approximately 1 in every 59 children is affected by ASD, an increase of over 160 percent since 2000. According to the Centers for Disease Control (CDC), the majority of children diagnosed with autism had concerns noted in their medical records by age 3. These concerns are generally centered around developmental milestones most children reach between the ages of 2 months and 5 years of age, including responses to loud noises, facial recognition, improvement of fine and gross motor skills, and more.
Despite the high volume of noted concerns, fewer than half of children with ASD received their first diagnosis by age 4. This gap between first concern and diagnosis can negatively impact a child’s development, as they are not receiving the services that could positively affect their growth.
Fig 1 Data from Definitive Healthcare’s platform on commercial medical claims analytics using ICD-10 code F840 diagnosis information from calendar year 2017.
However, ASD does not only affect children. Roughly 50,000 adolescents with autism turn 18 every year, aging out of support services that are geared toward children. Over 26 percent of young adults on the autism spectrum reported receiving no support services in their early 20s to find employment, continue their education, or improve their ability to live independently. Additionally, 37 percent of young adults with autism reported being “disconnected” in their early 20s, which means they have never held a job or received post-secondary education. Only 8 percent of young adults with other disabilities, like speech-language impairments and learning disabilities, reported being disconnected in this way.
Autism diagnoses are characterized by motor impairments and developmental delays in patients that impact cognition and behavior. But in addition to these attributes, patients with ASD are also far more likely to be diagnosed with neurological comorbidities, such as sleep disorders and epilepsy, with a greater clinical severity than their allistic, or neurotypical, peers.
Sleep disorders like insomnia occur in 44 to 83 percent of patients with ASD, depending on the targeted population, with children being the most highly affected group. Epilepsy is reported in one-third of autistic children. These conditions, as well as other neurological disorders, can be treated by specialists in a way that could contribute to the improvement of behavioral and cognitive differences in autistic patients.
In 2017, hospitals reported more than 107,000 inpatient diagnoses of “autistic disorder” (ICD-10 F840) according to all-payor claims data from Definitive Healthcare’s hospitals and IDNs platform. Of these diagnoses, under 5,600 were classified as the primary diagnosis. For 95 percent of patients, an ASD diagnosis comes after the identification of another medical condition.
Patients with ASD are more likely to have greater sensory and communication needs than allistic patients. Hospitals are often thrumming with activity, making it easy for autistic patients to be overstimulated. This, in conjunction with the physical contact and rapid communication that is commonplace during medical visits, can make regular provider visits inaccessible to patients with ASD.
Boston Medical Center in Massachusetts launched an autism friendly initiative for patients on the spectrum. The program includes trainings for medical, counseling, and pediatric dental school students. BMC is also providing “sensory toolboxes” in multiple departments, featuring items like sunglasses, stress balls, and headphones, to ensure autistic patients are as comfortable as possible during visits.
Fig 2 Data from Definitive Healthcare’s platform on hospitals & IDNs. Clinical and financial data from CMS Medicare Cost Report with information from CY 2017.
The Children’s Hospital at TriStar Centennial in Tennessee announced the launch of a sensory-friendly program in early April. Hospital leaders are aiming to reduce the risk of overstimulation for autistic children at the facility. Some steps hospital staff are taking include: the use of designated “quiet rooms” in the ER, replacing buzzing fluorescent lights with quieter LEDs equipped with dimming functions, the provision of noise-cancelling headphones, and more.
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