Community Health Worker–Supported Laboratory and Preventive Care Navigation for Autistic Children in Underserved Communities: A Scalable Public Health Model (Published)
Autistic children from low-income, minoritized, and rural communities face severe health equity disparities, marked by delayed diagnosis and depressed completion rates for clinically indicated etiologic laboratory investigations and preventive screenings. Fragmented health systems, transportation barriers, and needle-induced procedural anxiety during pediatric phlebotomy represent major structural obstacles.To evaluate the clinical effectiveness, procedural outcomes, and health economic return on investment (ROI) of a Community Health Worker–Supported Laboratory and Preventive Care Navigation (CHW-LPN) model for autistic children in underserved communities.We conducted a multi-center, pragmatic, cluster-randomized hybrid type 1 effectiveness-implementation trial across 16 primary care sites (8 urban safety-net FQHCs and 8 rural clinics) in two Medicaid-expansion states. A cohort of 480 Medicaid-enrolled autistic children (aged 18–72 months) with primary care orders for Tier-1 genetic panels (chromosomal microarray/Fragile X), targeted metabolic profiles, routine lead/ferritin screening, or formal audiology were randomized 1:1 to the CHW-LPN intervention arm ($n = 240$) or Usual Care ($n = 240$). CHWs delivered structured pre-procedural sensory conditioning, visual schedules, topical lidocaine analgesia, mechanical vibration distraction (Buzzy), sensory-adapted phlebotomy, and closed-loop electronic health record tracking. The primary endpoint was 90-day laboratory completion. In intention-to-treat analyses, 81.3% ($n = 195$) of CHW-LPN participants completed ordered laboratory testing within 90 days compared to 31.7% ($n = 76$) in Usual Care (adjusted relative risk [aRR] = 2.56, 95% CI: 2.08–3.16, $p < 0.001$). Median time to completion decreased from 74.8 days to 22.4 days ($p < 0.001$). First-attempt phlebotomy success reached 84.1% in CHW-LPN versus 38.2% in Usual Care ($p < 0.001$), while physical restraint requirements dropped from 64.5% to 8.2% ($p < 0.001$). Actionable clinical findings—including pathogenic copy number variants (14.3%), inborn metabolic errors (5.5%), elevated blood lead levels (9.4%), severe iron deficiency (20.3%), and hearing loss (8.6%)—were identified, with 92.8% achieving subspecialty loop closure. Health economic modeling demonstrated net savings of $629.90 per child, yielding a Medicaid ROI of $2.84 per $1.00 invested. The CHW-LPN model effectively resolves major points of attrition in pediatric neurodevelopmental care, significantly increasing laboratory completion, mitigating procedural distress, and generating substantial Medicaid cost offsets. State Medicaid agencies should authorize sustainable CHW reimbursement via State Plan Amendments to institutionalize this health equity intervention.
Keywords: Community Health Workers, autism spectrum disorder, etiologic laboratory testing, family navigation, pediatric health equity