Autism Translational Research Program: Increasing Access to Evidence-Based Care for Pediatric Patients With Autism

Purpose: The purpose of this presentation is to discuss the prevalence of pediatric autism and the endorsed, evidence-based practices for management of these patients in primary care clinics. Pediatric autism is currently at its highest rate. A recent estimate states that one in 59 children, ages 3 through 17 years, are being diagnosed with the autism (Autism Speaks, 2015; Autism Speaks, 2018). Hindrance to evidence-based practice has been identified as a critical concern in the care of pediatric patients with autism (CDC, 2016). Autism can be reliably diagnosed as early as age 2 years, and evidence-based interventions and treatment initiated by 3 years of age gives these patients the greatest possibility to experience the best outcomes (Centers for Disease Control and Prevention [CDC], 2016). Despite this, analysis of current evidence in pediatric autism evaluation, treatment, and management shows that pediatric patients with autism are not receiving accurate and timely evidence-based care in primary care settings. As an example, in a recent seven state case study, 72% of children identified with autism had a diagnosis in their records, however, most of the children were not diagnosed until age 4 years and 4 months (CDC, 2016). Of these children, 20% had documented symptoms of autism in their records, but were not receiving special service as they were still awaiting an official evaluation for and diagnosis of autism (CDC, 2016). Data collected in 2007 showed that only 22.6% of children aged 10-35 months were screened for autism (Rice, C., Braun, K., Kogan, M., Smith, C., Kavanagh, L., Strickland, B., & Blumberg, S. J; 2014). Unfortunately, in many areas, these rates have not improved in the past 10 years (CDC, 2016).

Methods: As the incidence of pediatric autism continues to rise, it is imperative for healthcare leaders to work together and create strategies that improve access to evidence-based care in a timely manner to better serve these children. (CDC, 2016). While all healthcare leaders have the obligation to respond to the steadily increasing prevalence of pediatric autism, much responsibility is placed on primary care clinicians to manage their complex care. As front-line providers, primary care clinicians administer developmental screenings, order and interpret diagnostic tests, make referrals, and oversee complications and co-morbidities that are associated with autism. This presentation is designed to equip primary care clinicians in understanding the complexities of pediatric autism and increasing the clinician’s confidence in managing the care of these complicated patients.

The economic concerns associated with pediatric autism serve as an important factor in adjusting the care these patients are receiving in primary care clinics. caring for pediatric patients with autism is estimated to cost at least $17,000 more per year than caring for a child without autism (CDC, 2016). Nationally, this equates to over $11.5 billion yearly (CDC, 2016). Costs include health care, education, autism-related therapy, family-coordinated services, and professional caregiver assistance (CDC, 2016). The estimated cost to the United States for autism care in 2015 was $268 billion, with projected costs rising to $461 billion in 2025 if autism’s prevalence remains at today’s rates (Leigh & Du, 2015). Mothers with children who have autism have reported the need to stop working to care for their child (CDC, 2016). Typically, mothers are employed work about 7 hours less per week and earn 56% less than mothers of children with no major health issues (CDC, 2016). Another reason why it is imperative to improve access to evidence-based care for pediatric patients with autism is so these children are able to function and thrive to their fullest potential. It is important to value the strengths and abilities of those who have autism. An estimated 46% of individuals with autism have above average intelligence (CDC, 2016). Individuals with autism can be strong visual and auditory learners; can learn things in detail; can remember the learned information for a prolonged time; and can excel in math, science, music, or art (National Institutes of Mental Health [NIMH], 2016). They have a place in our society, and we will benefit as a society from their contributions.

Results: This presentation will cover the implementation and results of the Access to Autism pilot project that occurred in the winter of 2018. The purpose of this pilot project was to decrease the time it took for pediatric patients with autism to receive evidence-based treatment through the use of a clinical practice guideline designed especially for primary care clinics. The guideline filled the knowledge gap regarding how to get up-to-date, evidence-based care of pediatric patients with autism from research to practice. The clinical practice guideline was specifically created to be used in primary care clinics for pediatric patients from ages 9 to 60 months who present to primary care clinics for a well-child evaluation. It lists appropriate screening tools and offers step-by-step recommendations for healthcare providers to follow when a pediatric patient is identified as being at-risk for autism. The guideline was implemented for 8 weeks by 9 primary care healthcare providers. Surveys were utilized to evaluate provider satisfaction of the guideline, and to assess provider knowledge of pediatric autism care before and after the implementation period. Descriptive statistics explaining the project’s results will be displayed during the presentation.

Conclusion: It is expected that discussing the Access for Autism pilot project among healthcare providers will continue to positively affect the percentage of pediatric patients who receive early intervention. The clinical practice guideline aligns clinical practice with the Healthy People 2020 objectives and the American Academy of Pediatrics recommendations. During this presentation, the most current recommendations will be explained, along with billing and coding references for clinicians to use to be fully compensated for their services. Upon hearing the presentation, individual practice changes should reflect a growth in the number of children with autism who are enrolled in special services such as physical, speech, developmental and occupational therapy, by age 48 months in keeping with current recommendations (Healthy People 2020, 2017). The insight gained from this project serve as the first steps in seeking to remove barriers to evidence-base care in this rapidly growing, vulnerable population, and will be beneficial for all of the participants at the Sigma Theta Tau International conference.