Families of children with motor disabilities, such as cerebral palsy, Duchenne or Becker muscular dystrophies, or spinal muscular atrophy commonly describe a long and often heartrending “odyssey” of tests and consultations before they arrived at the correct diagnosis. As such, initiatives related to neuromotor screening and global motor delays are a priority area for the Program to Enhance the Health and Development of Infants and Children (PEHDIC)—a cooperative agreement between the American Academy of Pediatrics (AAP) and the Centers for Disease Control and Prevention (CDC).
Understanding the Need for Clinical Guidance Regarding Neuromotor Screening: Physician and Primary Care Provider Education
The AAP convened an Expert Panel focused on improving early detection of motor delays and examining current provider practices regarding medical work-up of children identified with global delays. Information gathered from focus groups and a Quality Improvement Innovation Networks (QuIIN) survey of primary care providers documented the need for clinical guidance regarding the identification, workup, and referral of children with possible neuromotor problems or delays. The focus groups revealed that many pediatricians often concentrate on developmental screening for social-emotional concerns such as autism, paying less attention to motor delays. To address this need, the first activity of the Expert Panel was to develop a clinical report.
Motor Delays: Early Identification and Evaluation
The AAP clinical report, Motor Delays: Early Identification and Evaluation, and accompanying algorithm, was published in the June 2013 issue of Pediatrics to guide pediatricians in the screening and workup of children with suspected motor delays. Specifically, the report offers guidance regarding children who demonstrate motor delays and variations in muscle tone, and contains an accompanying clinical decision algorithm to inform care provision. Subsequent physician and provider education opportunities are in development utilizing this clinical report.