Clinical Associate Professor University of British Columbia North Vancouver, British Columbia, Canada
Objectives : International guidelines recommend diagnosing cerebral palsy (CP) in infancy using standardized tools, yet routine surveillance systems seldom report when diagnosis actually occurs. This scoping review examined whether high-income countries publicly report diagnostic age and whether surveillance frameworks distinguish among the milestones of suspicion, “high-risk” designation, and confirmed diagnosis.
Design: Following PRISMA-ScR guidance, publicly available registry reports, national or professional guidelines, early-detection or neonatal follow-up program descriptions, and peer-reviewed studies published from 2000 to 2024 were reviewed. Sources were drawn from eight high-income countries represented in the reviewed literature: Denmark, Australia, Canada, the United States, the United Kingdom, Sweden, Norway, and Finland. Inclusion required documentation of age at CP suspicion, age at “high-risk of CP” designation, or age at confirmed diagnosis. Extracted data included reporting frequency, terminology, definitions, age metrics, and practice settings.
Results: Only Denmark consistently reported diagnostic age through national registry surveillance, with median age at diagnosis remaining between 11 and 13 months across cohorts. No other high-income registry routinely documented diagnostic age, and most guidelines referenced early detection without specifying reporting expectations. Across the eight high-income countries reviewed, three milestones were identifiable: age at suspicion, age at high-risk designation, and age at confirmed diagnosis. These milestones were rarely differentiated in surveillance outputs, and their timing was not routinely captured. Although published implementation studies demonstrate earlier diagnosis in specialized settings, these findings have not been reflected in national reporting frameworks. Reported system-level barriers included inconsistent terminology, limited integration of early-detection tools into routine care, and a lack of standardized reporting requirements.
Conclusion: Diagnostic-age reporting is largely absent from CP surveillance systems, limiting the ability to assess early detection performance or compare progress across jurisdictions. Incorporating diagnostic age as a routine surveillance metric would strengthen benchmarking, guide quality improvement initiatives, and align surveillance practices with current consensus guidelines.
