This guideline focuses on the specialist developmental support and surveillance needed for the early identification of developmental problems and disorders in children born preterm.

The proportion of babies born preterm in the UK, defined as birth before 37 weeks’ gestation, has remained steady for several years at 7.4%. In 2014 this amounted to 48,985 from a total of 656,957 live births, of which 2438 (5% of preterm births and 0.4% of all births) were before 28 weeks' gestation.

Preterm birth is associated with an increased risk of developmental problems and disorders. These include developmental challenges, physical, sensory, cognitive and learning disorders, and emotional and behavioural problems. These may extend into adolescence and, in some cases, be lifelong. In particular, the risk and prevalence of impairments that affect educational attainment rise sharply in children born before 28 weeks' gestation. Although most major disorders are detectable in the first 2 years of life, several developmental disorders and problems, particularly those that have an impact on the child's ability to participate and on their educational attainment, may not be apparent until they are older.

Identifying developmental problems and disorders in all children (born preterm or at term in England) is currently through the Healthy Child Programme, which incorporates nationally approved population screening programmes recommended by Public Health England. This includes a review at 2 years to 2 1/2 years of age which includes an assessment of social, emotional, behavioural and language development.

This guideline aims to improve the identification of developmental problems and disorders in children born preterm, alert health professionals to risk factors that may increase the likelihood of these problems, define those preterm babies who are eligible for enhanced surveillance and support, and set standards for the delivery of enhanced surveillance and support. This is expected to improve outcomes for these children by reducing variation in follow-up and enabling benchmarking of neonatal care.

Contents

• Introduction
• 1. Guideline summary
  • 1.1. Group membership and National Guideline Alliance (NGA) staff
  • 1.2. Developmental support and surveillance algorithm
  • 1.3. Recommendations
  • 1.4. Research recommendations
  • 1.5. Schedule for updating the guideline
• 2. Development of the guideline
  • 2.1. What is a NICE guideline?
  • 2.2. Remit
  • 2.3. Who developed this guideline?
  • 2.4. What the guideline covers
  • 2.5. Other versions of the guideline
  • 2.6. Relationship between the guidance and other NICE guidance
• 3. Guideline development methodology
  • 3.1. Developing the review questions and protocols
  • 3.2. Searching for evidence
  • 3.3. Reviewing and synthesising the evidence
  • 3.4. Developing recommendations
• 4. Risk and prevalence of developmental problems and disorders
  • 4.1. Introduction
  • 4.2. Risk of developmental problems
  • 4.3. Risk of developmental disorders
  • 4.4. Prevalence of developmental problems
  • 4.5. Prevalence of developmental disorders
  • 4.6. Evidence to recommendations
  • 4.7. Recommendations
• 5. Information, support and developmental surveillance
  • 5.1. Introduction
  • 5.2. Information provision
  • 5.3. Support for parents and carers of children who are born preterm
  • 5.4. Identification of problems and disorders
  • 5.5. Delivering enhanced support and surveillance
  • 5.6. Sharing information
  • 5.7. Recommendations
• References
• Glossary of terms
• Acronyms and abbreviations
• Appendices A - J. Appendices
  • Appendix A. Scope
  • Appendix B. Stakeholders
  • Appendix C. Declarations of interest
  • Appendix D. Review protocols
  • Appendix E. Search strategies
  • Appendix F. PRISMA flow charts
  • Appendix G. Excluded studies
  • Appendix H. Health economic analysis on identification of problems and disorders
  • Appendix I. Resource impact analysis of delivery of enhanced support and surveillance
  • Appendix J. Forest plots and receiver operating curves
• Appendix K and L. Evidence tables and supplementary tables - developmental follow-up of preterm babies
  • Appendix K. Evidence tables
  • Appendix L. Supplementary tables

V 3.0

Developed by the National Guideline Alliance, hosted by the Royal College of Obstetricians and Gynaecologists

Disclaimer: Healthcare professionals are expected to take NICE clinical guidelines fully into account when exercising their clinical judgement. However, the guidance does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of each patient, in consultation with the patient and/or their guardian or carer.