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Cognitive development

Authors

Wolke D, van Wassenaer-Leemhuis AG

Target group

Infants born very preterm or those infants with risk factors (see preamble TEG Follow-up & continuing care) and parents

User group

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    
1. 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 sheet
       
2. Parents receive standardised feedback about the results of the cognitive assessments in language that is accessible to them. (19) A (High quality) Parent feedback
       
3. 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    
4. Country specific test norms are applied when interpreting the results of screening tests. (20) A (High quality) Guideline
       
5. A unit guideline on follow-up programme including cognitive assessment is adhered to by all healthcare professionals. B (High quality) Guideline
       
6. 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    
7. A unit guideline on follow-up programme including cognitive assessment is available and regularly updated. B (High quality) Guideline
       
8. Training on standardised cognitive assessments is ensured. B (High quality) Training documentation
       
9. A follow-up programme after discharge including cognitive assessment is funded and supported. (19,24,25) A (High quality)
B (Moderate quality)
Audit report
       
10. Appropriate assessment rooms and facilities are available (hospital or provider). (19) A (High quality)
B (Moderate quality)
Audit report
       
11. Follow-up rates are continuously monitored. (19) A (High quality)
B (Moderate quality)
Audit report
       
12. Cognitive outcomes are used for staff feedback. (19) A (High quality)
B (Moderate quality)
Audit report
       
For health service    
13. A national guideline on follow-up programme including cognitive assessment is available and regularly updated. B (High quality) Guideline
       
14. A cognitive follow-up service is specified, funded and monitored. B (High quality) Audit 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.
B (Moderate quality)
  • Parents are supported by a case manager. (26) (see TEG Follow-up & continuing care)
A (High quality)
  • 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.
 

Sources

  1. Wolke D, Strauss VY-C, Johnson S, Gilmore C, Marlow N, Jaekel J. Universal gestational age effects on cognitive and basic mathematic processing: 2 cohorts in 2 countries. J Pediatr. 2015 Jun;166(6):1410-1416-2.
  2. MacKay DF, Smith GCS, Dobbie R, Pell JP. Gestational Age at Delivery and Special Educational Need: Retrospective Cohort Study of 407,503 Schoolchildren. Lau TK, editor. PLoS Med. 2010 Jun 8;7(6):e1000289.
  3. Wolke D, Meyer R. Cognitive status, language attainment, and prereading skills of 6-year-old very preterm children and their peers: the Bavarian Longitudinal Study. Dev Med Child Neurol. 1999 Feb 1;41(2):94–109.
  4. Eryigit Madzwamuse S, Baumann N, Jaekel J, Bartmann P, Wolke D. Neuro-cognitive performance of very preterm or very low birth weight adults at 26 years. J Child Psychol Psychiatry. 2015 Aug;56(8):857–64.
  5. Wolke P. Preterm and Low Birth Weight Babies. In: Howlin P, Charman T, Ghaziuddin M, editors. The SAGE Handbook of Developmental Disorders [Internet]. 1st ed. London: SAGE; 2011 [cited 2018 May 16]. p. 497–527. Available from: https://uk.sagepub.com/en-gb/eur/the-sage-handbook-of-developmental-disorders/book230988
  6. Twilhaar ES, Wade RM, de Kieviet JF, van Goudoever JB, van Elburg RM, Oosterlaan J. Cognitive Outcomes of Children Born Extremely or Very Preterm Since the 1990s and Associated Risk Factors: A Meta-analysis and Meta-regression. JAMA Pediatr. 2018 Apr 1;172(4):361–7.
  7. Twilhaar ES, de Kieviet JF, Aarnoudse-Moens CS, van Elburg RM, Oosterlaan J. Academic performance of children born preterm: a meta-analysis and meta-regression. Arch Dis Child Fetal Neonatal Ed. 2017 Aug 28;
  8. Breeman LD, Jaekel J, Baumann N, Bartmann P, Wolke D. Preterm Cognitive Function Into Adulthood. Pediatrics. 2015 Sep;136(3):415–23.
  9. Linsell L, Johnson S, Wolke D, O’Reilly H, Morris JK, Kurinczuk JJ, et al. Cognitive trajectories from infancy to early adulthood following birth before 26 weeks of gestation: a prospective, population-based cohort study. Arch Dis Child. 2018 Apr;103(4):363–70.
  10. Basten M, Jaekel J, Johnson S, Gilmore C, Wolke D. Preterm Birth and Adult Wealth: Mathematics Skills Count. Psychol Sci. 2015 Oct;26(10):1608–19.
  11. Petrou S, Johnson S, Wolke D, Marlow N. The association between neurodevelopmental disability and economic outcomes during mid-childhood. Child Care Health Dev. 2013 May;39(3):345–57.
  12. Orton J, Spittle A, Doyle L, Anderson P, Boyd R. Do early intervention programmes improve cognitive and motor outcomes for preterm infants after discharge? A systematic review. Dev Med Child Neurol. 2009 Nov;51(11):851–9.
  13. Spittle A. Early intervention cognitive effects not sustained past preschool. J Pediatr. 2015 Mar;166(3):779.
  14. van Wassenaer-Leemhuis AG, Jeukens-Visser M, van Hus JWP, Meijssen D, Wolf M-J, Kok JH, et al. Rethinking preventive post-discharge intervention programmes for very preterm infants and their parents. Dev Med Child Neurol. 2016 Mar;58:67–73.
  15. O’Hare A, Bremner L. Management of developmental speech and language disorders: Part 1. Arch Dis Child. 2016 Mar;101(3):272–7.
  16. NICE Pathways. Developmental follow-up of children and young people bornpreterm overview. National Institute for Health and Clinical Excellence; 2018.
  17. Doyle LW, Anderson PJ, Battin M, Bowen JR, Brown N, Callanan C, et al. Long term follow up of high risk children: who, why and how? BMC Pediatr. 2014 Nov 17;14:279.
  18. Johnson S, Gilmore C, Gallimore I, Jaekel J, Wolke D. The long-term consequences of preterm birth: what do teachers know? Dev Med Child Neurol. 2015 Jun;57(6):571–7.
  19. NICE guideline. Developmental follow-up of children and young people born preterm (NG 72) [Internet]. National Institute for Health and Clinical Excellence; 2017. Available from: https://www.nice.org.uk/guidance/ng72
  20. Westera JJ, Houtzager BA, Overdiek B, van Wassenaer AG. Applying Dutch and US versions of the BSID-II in Dutch children born preterm leads to different outcomes. Dev Med Child Neurol. 2008 Jun;50(6):445–9.
  21. Johnson S, Wolke D, Marlow N. Outcome monitoring in preterm populations – Measures and methods. Z Für Psychol J Psychol. 2008 Jan 1;216(3):135–46.
  22. Drotar D, Stancin T, Dworkin PH, Sices L, Wood S. Selecting developmental surveillance and screening tools. Pediatr Rev. 2008 Oct;29(10):e52-58.
  23. van Veen S, Aarnoudse-Moens CSH, van Kaam AH, Oosterlaan J, van Wassenaer-Leemhuis AG. Consequences of Correcting Intelligence Quotient for Prematurity at Age 5 Years. J Pediatr. 2016 Jun;173:90–5.
  24. Hille ETM, Elbertse L, Gravenhorst JB, Brand R, Verloove-Vanhorick SP, Dutch POPS-19 Collaborative Study Group. Nonresponse bias in a follow-up study of 19-year-old adolescents born as preterm infants. Pediatrics. 2005 Nov;116(5):e662-666.
  25. Wolke D, Söhne B, Ohrt B, Riegel K. Follow-up of preterm children: important to document dropouts. The Lancet. 1995 Feb 18;345(8947):447.
  26. Hüning BM, Reimann M, Beerenberg U, Stein A, Schmidt A, Felderhoff-Müser U. Establishment of a family-centred care programme with follow-up home visits: implications for clinical care and economic characteristics. Klin Pädiatr. 2012 Nov;224(7):431–6.
  27. Bassani DG, Arora P, Wazny K, Gaffey MF, Lenters L, Bhutta ZA. Financial incentives and coverage of child health interventions: a systematic review and meta-analysis. BMC Public Health. 2013;13 Suppl 3:S30.
  28. Wang CJ, McGlynn EA, Brook RH, Leonard CH, Piecuch RE, Hsueh SI, et al. Quality-of-care indicators for the neurodevelopmental follow-up of very low birth weight children: results of an expert panel process. Pediatrics. 2006 Jun;117(6):2080–92.
  29. Mercier CE, Dunn MS, Ferrelli KR, Howard DB, Soll RF, Vermont Oxford Network ELBW Infant Follow-Up Study Group. Neurodevelopmental outcome of extremely low birth weight infants from the Vermont Oxford network: 1998-2003. Neonatology. 2010 Jun;97(4):329–38.
  30. Marks K, Hix-Small H, Clark K, Newman J. Lowering developmental screening thresholds and raising quality improvement for preterm children. Pediatrics. 2009 Jun;123(6):1516–23.
  31. Hix-Small H, Marks K, Squires J, Nickel R. Impact of implementing developmental screening at 12 and 24 months in a pediatric practice. Pediatrics. 2007 Aug;120(2):381–9.
  32. Johnson S, Wolke D, Marlow N, Preterm Infant Parenting Study Group. Developmental assessment of preterm infants at 2 years: validity of parent reports. Dev Med Child Neurol. 2008 Jan;50(1):58–62.

November 2018 / 1st edition / next revision: 2023

Recommended citation

EFCNI, Wolke D, van Wassenaer-Leemhuis AG, European Standards of Care for Newborn Health: Cognitive development; 2018.

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