Healthcare professionals, neonatal units, hospitals, follow-up teams, and health services
Statement of standard
Standardised assessment of neurological status and motor development is conducted in the first two years and repeated at transition to school.
Rationale
The goal is to evaluate neuromotor development and identify those individuals who will benefit from additional support and intervention to optimise motor development and thereby improve social and cognitive development.
Very preterm infants and term born infants with neonatal neurological morbidity (e.g. hypoxic ischaemic encephalopathy, stroke) are at risk of adverse neuromotor outcomes, including Cerebral Palsy (CP). (1–5) CP impacts on activities and participation in daily life. (6) In industrialised countries the prevalence of CP in preterm infants is decreasing, whereas it remains fairly unchanged in term born infants. (7) The prevalence of minor neurological dysfunction and motor impairment in the absence of CP continues to be high. (8,9)
Early detection of neuromotor problems paves the way for early intervention and is important for counselling of parents. (10) There is evidence that early intervention is associated with a positive effect on early motor development. (11,12) In case of CP, early interventions also aim to prevent contractures and deformities.
During infancy frequent changes in neuromotor development occur. (13,14) This implies that infants at risk may gradually move to typical development, but also that infants may develop a deficit, such as CP. By the age of two years most children with CP will have been assigned a diagnosis. For less severe neuromotor disorders, it usually takes longer before they are recognisable. Regular monitoring during infancy and preschool age is warranted. Knowledge of neuromotor status in terms of minor neurological dysfunction also serves the early detection of developmental coordination disorder (DCD), attention deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD) and specific learning disorders. (15)
Benefits
Short-term benefits
N/A
Long-term benefits
Better guidance for families (consensus)
Reliable and early (before two years of age) identification of those who will develop significant neuromotor problems (Cerebral Palsy, CP) (16–18)
Early referral to community services (consensus)
Facilitated early multidisciplinary approach to management and early intervention for those who are in need of further input (12,19)
Identification (at pre-school and school age) of those who develop motor difficulties in the absence of CP (20,21)
Optimised social and cognitive development (12)
Provides feedback to peri- and neonatal healthcare providers with regards to monitoring and improving quality of care (consensus)
Promoted and improved healthy life style by encouragement of motor activities (consensus)
Components of the standard
Component
Grading of evidence
Indicator of meeting the standard
For parents and family
Parents are informed about and invited by healthcare professionals to attend follow-up programme including screening for neuromotor developmental difficulties. (11,12,19)
A (High quality) B (High quality)
Patient information sheet1
Parents are involved in early intervention, e.g., family-centred care. (22–25)
A (High quality)
Parent feedback
Parents receive standardised feedback about the results of their child’s neuromotor health screening in a language that is accessible to them.
B (High quality)
Parent feedback
Children identified at risk are offered referral to the appropriate healthcare service and intervention is started in those infants with suspected abnormal neuromotor findings and motor delay (with parental consent). (11,12,22–25)
A (High quality) B (High quality)
Audit report2
For healthcare professionals
A guideline on follow-up programme including serial neuromotor assessment in the first two years (e.g. 3-6, 12, 24 months corrected age) and repeated at transition to school is adhered to by all healthcare professionals. (14,17,20,21,26)
A (High quality) B (High quality)
Audit report2, guideline
Children with diagnosis of CP: from 12 months corrected age onwards at each follow-up appointment standardised assessment of CP according to Surveillance of Cerebral Palsy in Europe (SCPE) criteria (27,28), and from 24 months corrected age onwards assessment of functional level of gross motor function, manual ability and communication is ensured. (29–34)
A (Moderate quality) B (High quality)
Audit report2, guideline
Training on standardised neuromotor assessment throughout infancy to school age (e.g. General Movement Assessment at 3-4 months corrected age) is attended by all responsible healthcare professionals. (16–18)
A (High quality) B (High quality)
Training documentation
For neonatal unit, hospital, and follow-up team
A guideline on the follow-up programme including neuromotor developmental health is available and regularly updated.
B (High quality)
Guideline
Follow-up programme after discharge including neuromotor developmental health is funded and supported.
B (Moderate quality)
Audit report2
Follow-up rates are continuously monitored.
B (Moderate quality)
Audit report2
Neuromotor developmental health outcomes are used for staff feedback.
B (Moderate quality)
Audit report2
Training on standardised neuromotor assessments is ensured.
B (High quality)
Training documentation
Appropriate assessment facilities are provided.
B (High quality)
Audit report2
For health service
A national guideline on follow-up programme including neuromotor assessment is available and regularly updated.
B (High quality)
Guideline
A follow-up service including neuromotor developmental health is specified, funded and monitored.
B (High quality)
Audit report2
1The indicator ‘patient information sheet’ is an example for written, detailed information, in which digital solutions are included, such as web-based systems, apps, brochures, information leaflets, and booklets.
2The indicator ‘audit report” can also be defined as a benchmarking report.
Where to go
Further development
Grading of evidence
For parents and family
Offer neuromotor follow-up into school age. (4)
A (High quality) B (Moderate quality)
For healthcare professionals
N/A
For neonatal unit, hospital, and follow-up team
Integrate neonatal and neuromotor follow-up electronic systems.
B (Moderate quality)
For health service
Monitor CP rates on a national basis. (7)
A (High quality)
Getting started
Initial steps
For parents and family
Parents are informed by healthcare professionals about follow-up including neuromotor development assessments.
For healthcare professionals
Start a service that uses parent reports using screening questionnaires (Ages and Stages Questionnaire (ASQ) or Parent Report of Children’s Abilities-Revised (PARCA-R).
Institute a training programme and standard schedule of assessment (screening or face-to-face assessments).
If the findings of parent completed developmental screening questionnaires indicate delayed development in any of the domains, discuss referral to appropriate services for more detailed assessment with the family and, if appropriate, make sure it will be initiated.
Attend training on standardised neuromotor and developmental assessments.
Establish a structure of communication with other healthcare institutions providing follow-up.
For neonatal unit, hospital, and follow-up team
Develop and implement a guideline on follow-up programme including neuromotor and developmental health.
Develop information material on follow-up programme including neuromotor and developmental health.
Establish a formal system of identifying infants who are eligible for follow-up and of keeping track of families.
Develop a structure of standardised multidisciplinary follow-up locally.
Establish a structure that facilitates early intervention in infants at high risk for neuromotor impairment.
Support healthcare professionals to participate in training on standardised neuromotor and developmental health assessments.
Provide space and resources for follow-up neuromotor developmental assessment in clinics or postal/online.
For health service
Develop and implement a national guideline on follow-up programme including neuromotor and developmental health.
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November 2018 / 1st edition / next revision: 2023
Recommended citation
EFCNI, Hadders-Algra M, Vollmer B et al., European Standards of Care for Newborn Health: Motor and neurological follow-up assessment. 2018.
