DMEJ
Duke Medical Ethics Journal
The COVID-19 Reality: Telemedicine and Childhood Autism Spectrum Disorder Diagnoses
By: Sophie Hurewitz
Byline: Sophie Hurewitz is a senior at Duke University majoring in Neuroscience with a minor in Global Health and a certificate in Child Policy Research. She plans to become a developmental-behavioral pediatrician to combine her interests in health and education policy with clinical medicine and child and adolescent development.
The COVID-19 pandemic has thrust healthcare providers and patients into what is still for many the unfamiliar world of telemedicine. Telemedicine, sometimes referred to as telehealth, refers to the delivery of healthcare services via information and communication technologies such as computers, phones, and tablets (Bradford et al., 2016). Research reveals several benefits to care delivery via telehealth, especially in the provision of non-emergency, routine care, and psychological services (Fortney et al., 2007). Telehealth services have also been found to be more cost-effective than traditional in-person services (Camden & Silva, 2021). Due to the COVID-19 pandemic, consumers, policymakers, and public and private payers pressed for rapid regulatory and procedural changes to promote telehealth as a mechanism to provide health care while practicing physical distancing necessitated by the pandemic. Many insurance companies elected to waive co-pays associated with telehealth, permit delivery of care to patients’ homes, and allow new and returning patients to choose telehealth options (Solomon & Soares, 2020). These recent, COVID-19 induced developments also mean that there is a dearth of research regarding the accuracy and validity of assessments and diagnoses made via telemedicine (Ros-DeMarize et al., 2021). This commentary will explore the nuances of telemedicine utilization by families of children with autism spectrum disorder with a review of literature examining existing telehealth benefits and disparities for this patient population.
“Not only are autism evaluations and assessments made via telemedicine a cost-effective strategy, but some research also suggests that they can also improve the family-centeredness of service provision”
Autism spectrum disorder (ASD) is a developmental disability impacting about 1 in 54 American children (Data & Statistics on Autism Spectrum Disorder, n.d.). ASD can cause significant social, communication, and behavioral challenges for children and adults alike that can interfere with learning, problem-solving, and social connection (What is Autism Spectrum Disorder?, n.d.). Diagnosing ASD is difficult because no medical or laboratory test exists that can diagnose the disorder. Instead, physicians and psychologists evaluate the child’s behavior using validated measures that include social communication, imaginative play, and problem-solving metrics (Luyster et al., 2009). Typically, ASD diagnoses are reliable in children 24 months or older (What is Autism Spectrum Disorder?, n.d.). However, many children are not diagnosed until much later, with particular disparities for children that are Black, Latinx, in poverty, from rural areas, or born to parents with limited formal education (Aylward et al., 2021, Zwaigenbaum et al., 2015). Such disparities are of particular importance since research reveals that early intervention treatment services (services for children 0-3 years) can improve a child’s development and overall functioning (Corsello, 2005). Delays in ASD diagnosis are directly related to outcomes since children without an official ASD diagnosis can access only general therapeutic services, leaving many children to miss out on ASD-specific interventions (Stahmer & Mandell, 2007). It is for these reasons that this new era of telemedicine could be an opportunity to provide formal ASD diagnoses and interventions to historically marginalized children (Gordon-Lipkin et al., 2016).
Telemedicine is not new in the field of developmental and behavioral pediatrics, especially since there has been a longstanding shortage of providers specializing in such diagnoses and interventions (Soares & Langkamp, 2012). In 2016, the American Board of Pediatrics recognized approximately 800 certified developmental-behavioral pediatricians, a number that represents just 0.68% of all pediatricians and 2.83% of pediatric subspecialists in this country (Soares et al., 2017). This pediatric behavioral health workforce shortage is especially problematic for children and families who live in rural or remote areas, have limited access to transportation, and are of lower socioeconomic status (Sutherland et al., 2019). In addition, some children and adolescents with ASD do not “travel well” to medical centers or hospitals, making telemedicine an important alternative mode of service delivery (Soares et al., 2013). Reduced travel burdens can allow for more baseline presentations to healthcare practitioners during diagnostic evaluations and therapeutic sessions (Soares et al., 2013). The COVID-19 pandemic inspired clinicians and researchers to begin developing new assessment tools specifically designed to be conducted via telemedicine, such as the Telemedicine-based Autism Spectrum Disorder Assessment in Toddlers (TELE-ASD-PEDS) measure developed by a team at Vanderbilt University (Wagner et al., 2021). Such tools designed for telemedicine include provider observation of play-based activities set up by the child’s parent or caregiver, provider coaching of the parent throughout the assessment, and careful observation of the child’s behavior (Gerdts, 2020). Not only are autism evaluations and assessments made via telemedicine a cost-effective strategy, but some research also suggests that they can improve the family-centeredness of service provision (Camden & Silva, 2021).
Although telemedicine has the potential to change developmental and behavioral pediatric assessments, diagnoses, and interventions, there are several ethical and equity concerns associated with the recent – and sometimes abrupt – shift to telehealth means of service delivery. Even though broadband internet access has been expanded and about 98% of the US has access to either fixed or mobile connectivity, many rural communities continue to face difficulties in securing stable, reliable access (Federal Communications Commission, 2018). Additionally, implementing telemedicine into existing hospital or clinic procedures and infrastructure can be costly; the necessary software and technologies can cost anywhere between approximately $3,000 and $30,000, excluding training of practitioners and staff in using the systems (Solomon & Soares, 2020). Clinics and hospital budgets that are unable to absorb such costs may be unable to serve their marginalized populations via telemedicine. Another concern is that many families may not own or have access to the technologies necessary to communicate with their providers via telemedicine. In a recent systematic review, only 38% of studies included in the review indicated that they provide the equipment necessary for the families to participate in telehealth appointments (Ellison et al., 2021). The remaining studies described how participants utilized their own technology and equipment, which may have limited the number of families that are able to participate in telehealth consultations (Ellison et al., 2021).
Telehealth implementation is largely dependent upon accreditation, integration of payments systems, and approval for insurance coverage (Hollander & Carr, 2020). Such decisions primarily rest in the hands of individual state governments, and prior to the pandemic, only about 20% of states required “payment parity” between telemedicine and in-person service provision (Lacktman et al., 2019). Payment parity is a term used to describe state-specific legislation that requires private insurance companies to reimburse providers for telemedicine care in the same way they would for in-person care. Although COVID-19 has led to regulatory changes that tilt more toward telehealth delivery, many worry that the changes are only temporary and will expire in a post-COVID world. Simply stated, limitations on access to and insurance coverage for telehealth options means that the neediest portions of the ASD population will be left without services or with in-person services that leave families exposed to the travel, time, and expense constraints that are known to lead to underutilization.
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I envision a U.S. healthcare system unified at both the federal and state level that supports telehealth; for the millions who would benefit from it, this system must provide the necessary technologies through rental or loan programs to patients lacking access, while compensating providers equally regardless of the service delivery method. As a future healthcare practitioner, I hope that these ethical concerns related to telemedicine and autism service provision are addressed by individual providers, healthcare systems, and state and federal government agencies in order to ensure equitable care for children with developmental and behavioral needs and their families.
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If you are interested in learning more about telehealth in the U.S. pre- and post-COVID, here is a great resource.
Review Editor: Eugene Cho
Design Editor: Elissa Gorman
References
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