Excerpt

Recognition of clinical risk and management for people with cerebral palsy changes throughout their lives. Understanding the aetiology of the condition, and so minimising the risk and early impact on the brain, may directly affect lifelong outcomes. Throughout growth and development, the assessment and management of complex comorbidities can change the trajectory of patient pathways. With increased longevity, there are now probably at least 3 times as many adults as children with cerebral palsy and as such it presents a considerable challenge for health and social services in the 21st century.

The management of cerebral palsy is a two-pronged approach, and is provided by a variety of multidisciplinary services with a focus on maximising individual function, choice and independence. The first of these is optimising movement and posture for optimal activity and participation while minimising potential secondary musculoskeletal deformity. The second is recognising and intervening to address the many developmental and clinical comorbidities that are associated with cerebral palsy. The former is dealt with by the NICE guideline Spasticity in under 19s, which concentrates on the motor disorder of cerebral palsy.

This guideline focuses on the second of these aspects, particularly where there may be variation in practice and in patient and family experience across England and Wales. It looks at practical areas of management that are important to children and young people with cerebral palsy, their families and carers, and a wide variety of healthcare and other professionals; these include causation, recognition and prognosis, as well as the associated developmental and clinical comorbidities.

Contents

• Introduction
• 1. Guideline summary
  • 1.1. Committee membership, National Guideline Alliance (NGA) staff and acknowledgements
  • 1.2. Care pathway/Algorithm
  • 1.3. Other versions of the guideline
  • 1.4. Schedule for updating the guideline
  • 1.5. Recommendations
  • 1.6. Key research recommendations
  • 1.7. Research recommendations
• 2. Development of the guideline
  • 2.1. What is a NICE clinical guideline?
  • 2.2. Remit
  • 2.3. Who developed this guideline?
  • 2.4. What this guideline covers
  • 2.5. What this guideline does not cover
  • 2.6. Relationships between the guideline 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 factors
  • 4.1. Introduction
  • 4.2. Description of clinical evidence: antenatal risk factors
  • 4.3. Evidence statements
  • 4.4. Description of clinical evidence: perinatal risk factors
  • 4.5. Evidence statements
  • 4.6. Description of clinical evidence: postnatal risk factors
  • 4.7. Evidence statements
  • 4.8. Economic evidence
  • 4.9. Evidence to recommendations
  • 4.10. Recommendations
  • 4.11. Research recommendations
• 5. Causes of cerebral palsy
  • 5.1. Introduction
  • 5.2. Description of clinical evidence
  • 5.3. Economic evidence
  • 5.4. Evidence statements
  • 5.5. Evidence to recommendations
  • 5.6. Recommendations
  • 5.7. Research recommendations
• 6. Clinical and developmental manifestations of cerebral palsy
  • 6.1. Introduction
  • 6.2. Description of clinical evidence
  • 6.3. Clinical evidence profile
  • 6.4. Economic evidence
  • 6.5. Evidence statements
  • 6.6. Evidence to recommendations
  • 6.7. Recommendations
  • 6.8. Research recommendations
• 7. Red flags for other neurological disorders
  • 7.1. Introduction
  • 7.2. Description of clinical evidence
  • 7.3. Clinical evidence profile
  • 7.4. Economic evidence
  • 7.5. Evidence statements
  • 7.6. Evidence to recommendations
  • 7.7. Recommendations
  • 7.8. Research recommendations
• 8. MRI and identification of causes of cerebral palsy
  • 8.1. Introduction
  • 8.2. Description of clinical evidence
  • 8.3. Clinical evidence profile
  • 8.4. Economic evidence
  • 8.5. Evidence statements
  • 8.6. Evidence to recommendations
  • 8.7. Recommendations
  • 8.8. Research recommendations
• 9. MRI and prognosis of cerebral palsy
  • 9.1. Introduction
  • 9.2. Description of clinical evidence
  • 9.3. Economic evidence
  • 9.4. Evidence statements
  • 9.5. Evidence to recommendations
  • 9.6. Recommendations
  • 9.7. Research recommendations
• 10. Prognosis for walking, talking and life expectancy
  • 10.1. Introduction
  • 10.2. Description of clinical evidence
  • 10.3. Clinical evidence results
  • 10.4. Economic evidence
  • 10.5. Evidence statements
  • 10.6. Evidence to recommendations
  • 10.7. Recommendations
  • 10.8. Research recommendations
• 11. Information and support
  • 11.1. Introduction
  • 11.2. Description of clinical evidence
  • 11.3. Clinical evidence profile
  • 11.4. Evidence statements
  • 11.5. Evidence to recommendations
  • 11.6. Recommendations
  • 11.7. Research recommendations
• 12. Assessment of eating, drinking and swallowing difficulties
  • 12.1. Introduction
  • 12.2. Description of clinical evidence
  • 12.3. Economic evidence
  • 12.4. Evidence statements
  • 12.5. Evidence to recommendations
  • 12.6. Recommendations
  • 12.7. Research recommendations
• 13. Management of eating, drinking and swallowing difficulties
  • 13.1. Introduction
  • 13.2. Description of clinical evidence
  • 13.3. Clinical evidence profile
  • 13.4. Economic evidence
  • 13.5. Evidence statements
  • 13.6. Evidence to recommendations
  • 13.7. Recommendations
  • 13.8. Research recommendations
• 14. Optimising nutritional status
  • 14.1. Introduction
  • 14.2. Description of clinical evidence
  • 14.3. Clinical evidence profile
  • 14.4. Economic evidence
  • 14.5. Evidence statements
  • 14.6. Evidence to recommendations
  • 14.7. Recommendations
  • 14.8. Research recommendations
• 15. Improving speech, language and communication: speech intelligibility
  • 15.1. Introduction
  • 15.2. Description of clinical evidence
  • 15.3. Economic evidence
  • 15.4. Evidence statements
  • 15.5. Evidence to recommendations
  • 15.6. Recommendations
  • 15.7. Research recommendations
• 16. Improving speech, language and communication: communication systems
  • 16.1. Introduction
  • 16.2. Description of clinical evidence
  • 16.3. Clinical evidence profile
  • 16.4. Evidence statements
  • 16.5. Economic evidence
  • 16.6. Evidence to recommendations
  • 16.7. Recommendations
  • 16.8. Research recommendations
• 17. Managing saliva control
  • 17.1. Introduction
  • 17.2. Description of clinical evidence
  • 17.3. Clinical evidence profile
  • 17.4. Economic evidence
  • 17.5. Evidence statements
  • 17.6. Evidence to recommendations
  • 17.7. Recommendations
  • 17.8. Research recommendations
• 18. Risk factors for low bone mineral density
  • 18.1. Introduction
  • 18.2. Description of clinical evidence
  • 18.3. Economic evidence
  • 18.4. Evidence statements
  • 18.5. Evidence to recommendations
  • 18.6. Recommendations
  • 18.7. Research recommendations
• 19. Prevention of reduced bone mineral density
  • 19.1. Introduction
  • 19.2. Description of clinical evidence
  • 19.3. Clinical evidence profile
  • 19.4. Economic evidence
  • 19.5. Evidence statements
  • 19.6. Evidence to recommendations
  • 19.7. Recommendations
  • 19.8. Research recommendations
• 20. Causes of pain, discomfort, distress and sleep disturbance
  • 20.1. Introduction
  • 20.2. Description of clinical evidence
  • 20.3. Economic evidence
  • 20.4. Evidence statements
  • 20.5. Evidence to recommendations
  • 20.6. Recommendations
  • 20.7. Research recommendations
• 21. Assessment of pain and/or distress, discomfort and sleep disturbances
  • 21.1. Introduction
  • 21.2. Description of clinical evidence
  • 21.3. Economic evidence
  • 21.4. Evidence statements
  • 21.5. Evidence to recommendations
  • 21.6. Recommendations
  • 21.7. Research recommendations
• 22. Management of pain, distress and discomfort
  • 22.1. Introduction
  • 22.2. Description of clinical evidence
  • 22.3. Economic evidence
  • 22.4. Evidence statements
  • 22.5. Evidence to recommendations
  • 22.6. Recommendations
  • 22.7. Research recommendations
• 23. Management of sleep disturbances
  • 23.1. Introduction
  • 23.2. Description of clinical evidence
  • 23.3. Clinical evidence profile
  • 23.4. Economic evidence
  • 23.5. Evidence statements
  • 23.6. Evidence to recommendations
  • 23.7. Recommendations
  • 23.8. Research recommendations
• 24. Assessment of mental health problems
  • 24.1. Introduction
  • 24.2. Description of clinical evidence
  • 24.3. Economic evidence
  • 24.4. Evidence statements
  • 24.5. Evidence to recommendations
  • 24.6. Recommendations
  • 24.7. Research recommendations
• 25. Management of mental health problems
  • 25.1. Introduction
  • 25.2. Description of clinical evidence
  • 25.3. Clinical evidence profile
  • 25.4. Economic evidence
  • 25.5. Evidence statements
  • 25.6. Evidence to recommendations
  • 25.7. Recommendations
  • 25.8. Research recommendations
• 26. Management of difficulties in registering and processing of sensory and perceptual information
  • 26.1. Introduction
  • 26.2. Description of clinical evidence
  • 26.3. Clinical evidence
  • 26.4. Economic evidence
  • 26.5. Evidence statements
  • 26.6. Evidence to recommendations
  • 26.7. Recommendations
  • 26.8. Research recommendations
• 27. Other comorbidities in cerebral palsy
  • 27.1. Introduction
  • 27.2. Description of clinical evidence: cognitive and learning disabilities
  • 27.3. Evidence statements
  • 27.4. Description of clinical evidence: constipation
  • 27.5. Evidence statements
  • 27.6. Description of clinical evidence: communication difficulties
  • 27.7. Evidence statements
  • 27.8. Description of clinical evidence: behavioural difficulties
  • 27.9. Evidence statements
  • 27.10. Description of clinical evidence: vomiting, regurgitation and reflux
  • 27.11. Evidence statements
  • 27.12. Description of clinical evidence: hearing impairment
  • 27.13. Evidence statements
  • 27.14. Description of clinical evidence: visual impairment
  • 27.15. Evidence statements
  • 27.16. Description of clinical evidence: epilepsy
  • 27.17. Evidence statements
  • 27.18. Economic evidence
  • 27.19. Evidence to recommendations
  • 27.20. Recommendations
  • 27.21. Research recommendations
• 28. Social care needs
  • 28.1. Introduction
  • 28.2. Description of clinical evidence
  • 28.3. Clinical evidence profile
  • 28.4. Economic evidence
  • 28.5. Evidence statements
  • 28.6. Evidence to recommendations
  • 28.7. Recommendations
  • 28.8. Research recommendations (refer to NICE’s guide for research recommendation development
• 29. Transition to adult services
  • 29.1. Introduction
  • 29.2. Description of clinical evidence
  • 29.3. Economic evidence
  • 29.4. Evidence statements
  • 29.5. Evidence to recommendations
  • 29.6. Recommendations
  • 29.7. Research recommendations
• 30. References
• 31. Acronyms and abbreviations
• 32. Glossary
• 33. Appendices
  • Appendix A. Scope
  • Appendix B. Stakeholders
  • Appendix C. Declarations of Interest
  • Appendix D. Review Protocols
  • Appendix E. Search strategies
  • Appendix F. Summary of Identified Studies
  • Appendix G. Health Economics
  • Appendix H. GRADE Tables
  • Appendix I. Forest Plots
  • Appendix J. Evidence Tables
  • Appendix K. Excluded Studies

Final Version

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.