Physicians' Perspectives on Early Screening and Diagnosis of ASD: Challenges and Solutions in Diverse Communities

Background: The AAP recommends developmental surveillance at all pediatric visits and ASD-specific screening at 18 and 24 months (Johnson et al., 2007). Surveys of healthcare professionals suggest tremendous variability in the rates at which clinicians follow these guidelines (Dosreis & Weiner, 2006; King et al., 2010; Pierce et al., 2011; Self, Parham, & Rajagopalan, 2015). Barriers to implementation of universal screening include integrating screening into work flow, time constraints, electronic health records, and training needs (Crais et al, 2014; King et al., 2010). There is a need for research further illuminating the challenges faced by physicians and other healthcare providers in low- and high-resource settings and solutions to increasing accurate screening, diagnosis, and referral to early intervention.

Objectives: To present qualitative research findings from focus groups with physicians from diverse metropolitan areas across the U.S., designed to 1) identify barriers to early detection and access to early intervention for children under 24 months, and 2) develop strategies to increase physicians’ confidence in identifying early signs of ASD, communicating with families, and accessing early intervention services in underserved communities.

Methods: Five focus groups with 45 primary care physicians and nurse practitioners were conducted in diverse regions of Florida, Georgia, and Pennsylvania. Driven by an iterative, grounded theory approach, researchers analyzed transcripts from audio-recordings using inductive coding. The use of multiple sites and diverse stakeholder viewpoints allowed for increased dimensions of variation and for saturation of themes. Physicians on the research team verified themes were grounded in the data, inferences were accurate, and that researcher bias did not interfere with interpretation.

Results: Illustrative quotes were drawn from diverse topics surrounding four major themes: 1) physician-perceived practical and psychological/motivational family challenges to accessing resources and services, including lack of medical follow-up, time constraints, and reimbursement issues; 2) efficient, effective tools for screening and assessment of ASD, including the utility of current tools, difficulty evaluating ASD in the primary care setting, and a perceived lack of reliable tools that would simplify diagnosis in the absence of available biomarkers, 3) the role of the primary care physicians in ASD screening and diagnosis, including confusion related to responsibilities of pediatricians and specialists who may be serving a population of varying cultural backgrounds; and finally, 4) strategies for building trust—the need to express empathy and offer hope to families, addressing parents’ questions about causality, vaccination, and complementary and alternative medicine to treat ASD, and concern about parents/caregivers switching physicians when ASD is mentioned.

Conclusions: Topics for further inquiry include physicians’ suggestions for refinement, including family navigation, continuity of care, a process-oriented approach to diagnosis of ASD, policy improvements, a team-centered medical home, a variety of media for reaching families, and the need for widespread physician training on ASD.