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PRACTICE GAPS
Clinicians caring for infants who are at risk of developing cerebral palsy
(CP) should be familiar with standardized assessment tools including the
General Movements Assessment and the Hammersmith Infant Neurological AUTHOR DISCLOSURES Dr Maitre has
worked under grants from the National
Examination. Clinicians trained in these tools can use them to make an
Institutes of Health and the Cerebral
early, accurate diagnosis of CP to allow for earlier intervention and Palsy Foundation; owns a patent, care of
improved outcomes. Enlighten Mobility and Thrive
Neuromedical; and is a cofounder of
Thrive Neuromedical. Dr Kim receives
support as a principal investigator for the
OBJECTIVES After completing this article, readers should be able to: Cerebral Palsy Foundation Early Detection
Initiative and has received honoraria for
being a guest speaker, courtesy of
1. Describe the changing spectrum of cerebral palsy (CP) diagnosis in Hackensack University and Morristown
infants treated in NICUs. Medical Center. This commentary does
not contain a discussion of an
2. Describe the development and implementation of clinical guidelines for unapproved/investigative use of a
early detection of CP. commercial product/device.
ABSTRACT CS
cUS
cramped synchronized
cranial ultrasound
Cerebral palsy (CP) is the most common physical disability across the DAYC Developmental Assessment of
Young Children
lifespan, but historically, CP has not been diagnosed before the age of 2
EDI Early Detection and
years. Barriers to early diagnosis ranged from lack of available biomarkers, Implementation
absence of curative treatments, perceived stigma associated with a lifelong ELGAN Extremely Low Gestational Age
Newborn Study
diagnosis, and a desire to rule out other diagnoses first. Most importantly,
FM fidgety movement
the fundamental question that remained was whether children would GMA General Movements
benefit from earlier detection and intervention given the paucity of Assessment
research. However, evidence-based guidelines published in 2017 GMFCS Gross Motor Function
Classification System
demonstrated that the General Movements Assessment, the Hammersmith HIE hypoxic-ischemic
Infant Neurological Examination, and neuroimaging can be combined with encephalopathy
other elements such as a clinical history and standardized motor HINE Hammersmith Infant
Neurological Examination
assessments to provide the highest predictive value for diagnosing CP as
HRIF high-risk infant follow-up
early as age 3 months in high-risk newborns. Implementation of these IVH intraventricular hemorrhage
guidelines has been successful in decreasing the age at CP diagnosis, MRI magnetic resonance imaging
PVL periventricular leukomalacia
particularly in high-risk infant follow-up clinics with expertise in performing
TIMP Test of Infant Motor
these assessments. Early detection of CP allows for clinical and research Performance
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CAREGIVER PERCEPTION OF EARLY DIAGNOSIS there is a missing diagnostic component or a negative result
Population data support the notion that delaying conversations (Table). (94)(97) During a focus group involving caregivers
surrounding even the suspicion of CP can be detrimental to of children with CP describing their experiences surround-
parental well-being. The vast majority of caregivers already ing CP diagnosis and the concept of using a designation
suspect the diagnosis before being told, and in 1 study, more early on, parents expressed that a designation was an accept-
than 40% of caregivers experienced dissatisfaction and resent- able alternative to start these conversations and could be re-
ment about a delayed diagnosis, which correlated with later visited even if a diagnosis was ultimately not made. (98)
depression. (95) On a large scale, the US-based implementa- Globally, clinicians who have shifted their practice toward
tion network found that 90% of parents reported receiving early detection of CP have adopted this designation to pro-
empathy and support at the diagnosis visit. (95) This positive vide a framework for shared decision-making and establish-
perception of early CP diagnosis has been confirmed, with pa- ing a common language between families and high-risk
rents generally wanting more information on the next steps. follow-up clinicians. Importantly, this shift to early detection
(81)(96)(97) Parents of children with CP have stated that ear- has allowed for the study of earlier interventions in children
lier diagnosis or use of a high-risk designation was beneficial with CP even younger than 2 years. The results are promis-
to their family and their child and was a priority in an honest ing, and an increasing pipeline of studies testing new inter-
yet positive conversation with diagnosis-related education and ventional approaches is actively underway. (99)(100)
resources. (97)
To address starting conversations earlier, a consensus CONCLUSIONS
statement was put forth by the EDI network and the Cana- Across NICUs and HRIF clinics around the world, a shift
dian Neonatal Follow-Up Network in 2022 to adopt a “high- toward early detection of CP to drive new early interven-
risk for CP” designation when a diagnosis is suspected but tions has evolved from decades of historical challenges
Adapted from Maitre NL, Byrne R, Duncan A, et al; CP EDI Consensus Group; Canadian Neonatal Follow-up Network. “High-risk for cerebral palsy”
designation: A clinical consensus statement. J Pediatr Rehabil Med. 2022;15(1):165–174.
and advances. The feasibility of decreasing the age at CP diag- 2. Noritz G, Davidson L, Steingass K; Council on Children with
Disabilities, American Academy for Cerebral Palsy and
nosis on a large scale has been proven, starting with practices
Developmental Medicine; Council on Children with Disabilities,
in the NICU and followed by an HRIF visit at 3 to 4 months’ American Academy for Cerebral Palsy and Developmental Medicine.
corrected age. (84) Early diagnosis and high-risk designation Providing a primary care medical home for children and youth with
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4. Maenner MJ, Blumberg SJ, Kogan MD, Christensen D, Yeargin-
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Group. Global prevalence of cerebral palsy: a systematic analysis.
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deficits and secondary impairments. All this can happen
6. Christensen D, Van Naarden Braun K, Doernberg NS, et al. Prevalence
while promoting better support, education, and well-being of cerebral palsy, co-occurring autism spectrum disorders, and motor
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• Know the evolution of neurodevelopmental
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