Healthcare professionals, neonatal units, hospitals, follow-up teams, and health services
Statement of standard
Standardised cognitive assessment is conducted by two years of age and repeated at transition to school.
Rationale
The goal is to assess cognitive function and academic attainment in very preterm children.
Clinically significant adverse effects on general intelligence and specific executive functions and academic achievement have been shown as gestation decreases. (1,2) The risk of cognitive impairment is highest for extremely preterm births (1) or those with perinatal asphyxia, and most severe in those with additional social disadvantage. (3,4) The frequency of severe to moderate cognitive impairment ranges from 20% to over 30% in extremely preterm born children. (5–7) Moderate to severe cognitive impairments are apparent from assessments in the second year and show high stability across childhood and into adulthood. (8,9) In contrast, those who have mild impairment in cognitive function in standard tests can show both improvement and deterioration across childhood in functioning and require repeated monitoring. Cognitive disabilities can co-occur with other problems, such as motor and behaviour problems. They have adverse effects on schooling, and long-term effects on employment and independent living. (10) Cognitive impairments have high economic costs. (11)
There are no proven interventions leading to sustained cognitive improvements into school age for children with moderate to severe cognitive impairment. There is some evidence for improvement with intervention for those with mild cognitive impairment. (12–14) Interventions to increase quality of life and appropriate schooling are required for all affected by cognitive impairment.
Benefits
Short-term benefits
N/A
Long-term benefits
Increased information on global cognitive functioning that is required for differential diagnosis (learning, inattention, autism, language, etc.) (15,16)
Better informed parents (17,18)
Appropriate intervention or management (17,18)
Improved decision-making for schooling and learning support (17,18)
Provided feedback to perinatal and neonatal services and healthcare officials (17,18)
Provides endpoint for obstetric and neonatal high-quality trials (consensus)
Reduced undue performance pressure on the child (consensus)
Reduced risk of secondary mental health problems (consensus)
Improved parent-child interaction adapted to cognitive ability (consensus)
Improved academic outcome (consensus)
Increased social integration and quality of life (consensus)
Reduced social burden (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 cognitive assessments. (19)
A (High quality) B (High quality)
Patient information sheet1
Parents receive standardised feedback about the results of the cognitive assessments in language that is accessible to them. (19)
A (High quality)
Parent feedback
Parents are asked to consent to use routine information from the school to include in outcome measures of cognitive impairment. (19)
A (High quality)
Completed consent
For healthcare professionals
Country specific test norms are applied when interpreting the results of screening tests. (20)
A (High quality)
Guideline
A unit guideline on follow-up programme including cognitive assessment is adhered to by all healthcare professionals.
B (High quality)
Guideline
Training on standardised cognitive assessments, in which gestational age and first language are taken into account is attended by all responsible healthcare professionals. (8,21–23)
A (High quality) B (High quality)
Training documentation
For neonatal unit, hospital and follow-up team
A unit guideline on follow-up programme including cognitive assessment is available and regularly updated.
B (High quality)
Guideline
Training on standardised cognitive assessments is ensured.
B (High quality)
Training documentation
A follow-up programme after discharge including cognitive assessment is funded and supported. (19,24,25)
A (High quality) B (Moderate quality)
Audit report2
Appropriate assessment rooms and facilities are available (hospital or provider). (19)
A (High quality) B (Moderate quality)
Audit report2
Follow-up rates are continuously monitored. (19)
A (High quality) B (Moderate quality)
Audit report2
Cognitive outcomes are used for staff feedback. (19)
A (High quality) B (Moderate quality)
Audit report2
For health service
A national guideline on follow-up programme including cognitive assessment is available and regularly updated.
B (High quality)
Guideline
A cognitive follow-up service 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
Cognitive follow-up at transition to secondary/high-school age is offered.
Incentives to attend follow-up programmes are provided. (2,19,27)
A (High quality)
For healthcare professionals
N/A
For neonatal unit and follow-up team
Establish an integrated electronic system with cognitive follow-up provider to schedule follow-up visits.
B (Low quality)
For hospital and follow-up team
Dedicate an assessment facility.
B (Moderate quality)
For health service
Develop a national network for benchmarking of follow-up outcomes. (28,29)
A (High quality)
Include follow-up information on an electronic healthcare card.
B (Low quality)
Getting started
Initial steps
For parents and family
Parents are informed by healthcare professionals about the cognitive follow-up that is available, and the provider thereof.
A service is initiated that uses parent reports using screening questionnaires. (30–32)
For healthcare professionals
Institute a standard schedule of assessment.
Attend training on standardised cognitive assessments.
Coordinate follow-up with other healthcare providers.
Identify an appropriate parent-completed cognitive screening questionnaire that has nationally established norms for use. (19)
For neonatal unit and follow-up team
Develop and implement a unit guideline on follow-up programme including cognitive assessments.
Develop information material on follow-up programme including cognitive assessments for parents.
Establish a formal system of keeping track of families.
Develop a structure of follow-up locally.
For hospital and follow-up team
Support healthcare professionals to participate in training on standardised cognitive assessments.
Provide space and resources for follow-up assessments in clinics or postal/online.
For health service
Develop and implement a national guideline on cognitive assessments for target group.
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November 2018 / 1st edition / next revision: 2023
Recommended citation
EFCNI, Wolke D, Leemhuis AG, European Standards of Care for Newborn Health: Cognitive development; 2018.
