Improvements in Patient Access Result in Earlier Age of Diagnosis in a Clinical Setting

Background: Recent CDC findings report a median age of autism diagnosis of 50 months (Christensen et al., 2016), though autism can be reliably diagnosed by 24 months. As one of the only specialty clinics in our state and one that serves a diverse and often economically disadvantaged population, children tend to receive a diagnosis even later, with a median age of diagnosis of 63 months in 2012. Many factors likely contribute to this later age of diagnosis including limited access to diagnostic services throughout the state as well as long wait times for appointments. In response to these concerns, several clinical initiatives were undertaken with the aim of improving patient access to diagnostic services.

Objectives: The purpose of this study was to determine whether initiatives to improve patient access and to reduce wait times were associated with clinically significant changes in age of diagnosis of ASD.

Methods: A patient access steering committee was formed in 2016 with the goal of reducing the waitlist and improving access to diagnostic assessments. Several procedural changes were made including requiring a PCP referral, clinical review of records prior to scheduling, and fast-tracking children younger than three into diagnostic appointments within two months of referral. Additionally, 26 clinicians participated together in an intensive diagnostic campaign to complete 170 assessments within 2 weeks. To determine whether these collective efforts resulted in lower age of diagnosis, records were reviewed for all children receiving diagnostic evaluations between November 2016 and June 2017. Information including child’s age, diagnosis, race, ethnicity, and gender were included in the review.

Results: 861 children received diagnostic evaluations between November 2016 and June 2017, and 619 (72%) of these received a diagnosis of ASD. The demographic characteristics of the children with ASD were as follows: 38% African American, 45% White, 3% Asian, and 14% other. Twelve percent of the families served were non-English speaking and 70% had Medicaid as their primary insurance. Of those children diagnosed with ASD, 523 (84%) had never been identified as having ASD before. The median age of first time diagnosis was 42 months (SD = 28 months) as compared to the median age of 63 months (SD = 31 months) in 2012. One hundred seventy-five (33%) of the children were younger than 3 years old at time of first diagnosis. There were no differences in age of diagnosis based on gender, race or ethnicity.

Conclusions: A multi-faceted approach to improving access to diagnostic services resulted in 21-month difference in median age of autism diagnosis (3 years, 6 months old in 2017 as compared to 5 years, 3 months in 2012). This change highlights the importance of access and the impact it can make on early identification of ASD, particularly in diverse communities. Given that early intervention is associated with better long-term outcomes for children with ASD (Dawson et al., 2009; MacDonald et al., 2014), such clinical undertakings are a priority for the field and continued work is needed to identify more children at earlier ages.