Patient Navigators Help Children Receive Timely ASD Diagnosis

Patient navigators may be key in helping disadvantaged children with autism spectrum disorder (ASD) overcome barriers to early intervention, according to a study from Rocky Mountain Human Services (RMHS), the University of Colorado and Denver Health.

Carolyn DiGuiseppi, M.D., Ph.D., led the four-year Services for Autism (SaLSA) study to test the ability of patient navigation to address barriers to early ASD evaluation and services in a disadvantaged minority population. Children benefit most from early detection and early intervention. However, most individuals with ASD are not diagnosed until after age 3, when access to early intervention services ends. Routine screening improves early recognition, but most children, particularly those from minority, foreign-born or low-income families, do not receive these screenings at all if no one recognizes initial signs of ASD.

According to preliminary SaLSA results, the most common barriers that families encounter to obtaining an ASD evaluation are scheduling the evaluation and obtaining the information they need to move forward (i.e. understanding the diagnosis, insurance or payment coverage, the evaluation process, etc.). Fifty-six percent of the families in the study were Spanish-speaking, making language another barrier in early ASD detection. Other barriers include transportation, medical needs of other family members and insurance or financial concerns.

The team is evaluating the effect of patient navigation, a process by which a navigator guides patients with a suspicious finding (e.g. a positive screening test) through and around barriers in the health care system to help ensure timely diagnosis and treatment. The patient navigator, who received specialized training about ASD and early intervention services, is a member of the Denver Health team who directly works with the family from seeking an evaluation at Denver Health to receiving services through RMHS.

Through participation, RMHS learned ways to improve how its staff members care for children with ASD.

“In addition to helping further our knowledge in the field in general, research helps us to evaluate the effectiveness of our procedures and learn how to better serve individuals and families,” said Jodi Dooling-Litfin, Ph.D., RMHS director of developmental & behavioral health. “Through this process, we learn what is and isn’t working as well as what others are doing in the field that we may be able to apply in our organization.”

For more information, visit the study’s National Institutes of Health clinical trial page.