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National Guideline Alliance (UK). Cerebral palsy in under 25s: assessment and management. London: National Institute for Health and Care Excellence (NICE); 2017 Jan. (NICE Guideline, No. 62.)
2.1. What is a NICE clinical guideline?
National Institute for Health and Care Excellence (NICE) clinical guidelines are recommendations for the care of individuals in specific clinical conditions or circumstances within the NHS – from prevention and self-care through primary and secondary care to more specialised services. We base our clinical guidelines on the best available research evidence, with the aim of improving the quality of healthcare. We use predetermined and systematic methods to identify and evaluate the evidence relating to specific review questions.
NICE clinical guidelines can:
- provide recommendations for the treatment and care of people by healthcare professionals
- be used to develop standards to assess the clinical practice of individual healthcare professionals
- be used in the education and training of healthcare professionals
- help patients to make informed decisions
- improve communication between patients and healthcare professionals.
While guidelines assist the practice of healthcare professionals, they do not replace their knowledge and skills.
We produce our guidelines using the following steps:
- The guideline topic is referred to NICE from the Department of Health.
- Stakeholders register an interest in the guideline and are consulted throughout the development process.
- The scope is prepared by the National Guideline Alliance (NGA).
- The NGA establishes a guideline committee.
- A draft guideline is produced after the Committee members assess the available evidence and makes recommendations.
- There is a consultation on the draft guideline.
- The final guideline is produced.
The NGA and NICE produce a number of versions of this guideline:
- The ‘full guideline’ contains all the recommendations, together with details of the methods used and the underpinning evidence.
- The ‘short guideline’ lists the recommendations, context and recommendations for research.
- ‘Information for the public’ is written using suitable language for people without specialist medical knowledge.
- NICE Pathways brings together all connected NICE guidance.
2.2. Remit
NICE received the remit for this guideline from the Department of Health. It commissioned the NGA to produce the guideline.
The remit for this guideline is to develop a clinical guideline on the diagnosis and management of cerebral palsy in children and young people.
2.3. Who developed this guideline?
A multidisciplinary committee comprising healthcare professionals and researchers as well as lay members developed this guideline (see the list of Committee members and acknowledgements).
NICE funds the NGA and thus supported the development of this guideline. The Committee was convened by the NGA and chaired by Dr Charlie Fairhurst in accordance with guidance from NICE.
The Committee met every 6 weeks during the development of the guideline. At the start of the guideline development process all Committee members declared interests, including consultancies, fee-paid work, shareholdings, fellowships and support from the healthcare industry. At all subsequent Committee meetings, members declared arising conflicts of interest.
Members were either required to withdraw completely or for part of the discussion if their declared interest made it appropriate. The details of declared interests and the actions taken are shown in Appendix C.
Staff from the NGA provided methodological support and guidance for the development process. The team working on the guideline included a guideline lead, a project manager, systematic reviewers, health economists and information scientists. They undertook systematic searches of the literature, appraised the evidence, conducted meta-analysis and cost-effectiveness analysis where appropriate and drafted the guideline in collaboration with the Committee.
2.4. What this guideline covers
2.4.1. Groups that will be covered
This guideline covers the following groups:
- Children and young people, from birth up to their 25th birthday, who have cerebral palsy.
- Subgroups to be considered:
- recognised subgroups within the cerebral palsy population, depending on level of cognitive disability and functional disability (for example, Gross Motor Function Classification System levels I to V), and age ranges will be considered where appropriate.
2.4.2. Key clinical issues that will be covered
The following clinical issues are covered in this guideline:
- Diagnosis and assessment
- Determining the key clinical and developmental manifestations of cerebral palsy at first presentation in order to help with early recognition.
- Identifying risk factors for cerebral palsy that may:
- inform the need for enhanced surveillance
- help in diagnosing the underlying cause of cerebral palsy
- facilitate early intervention.
- Identifying the key information to be obtained from history and examination, including developmental screening to help in determining the underlying cause of cerebral palsy.
- Identifying ‘red flags’ that might suggest a neurodevelopmental disorder other than cerebral palsy, such as progressive neurological or neuromuscular disorders.
- Determining the potential value of MRI of the brain in cerebral palsy.
- The prognosis for children and young people with cerebral palsy in relation to:
- ability to walk
- ability to talk
- life expectancy.
- Identifying common and important comorbidities associated with cerebral palsy and the subgroups most at risk of these comorbidities.
- Determining an effective approach to investigating difficulties with eating, drinking and swallowing in children and young people with cerebral palsy, including:
- clinical observation
- videofluoroscopic swallow studies and fibroscopic endoscopy.
- Interventions
- Managing mental health problems in children and young people with cerebral palsy.
- Determining the effectiveness of interventions in tackling communication difficulties in children and young people with cerebral palsy.
- Determining the effective management of difficulties with eating, drinking and swallowing in children and young people with cerebral palsy.
- Determining the effective management of difficulties with saliva control (drooling) in children and young people with cerebral palsy.
- Nutritional management in children and young people with cerebral palsy.
- Assessing and managing pain, discomfort, distress and sleep disturbance in children and young people with cerebral palsy.
- Interventions to reduce the risk of reduced bone mineral density and low-impact fractures in children and young people with cerebral palsy.
- Managing difficulties associated with the processing of sensory and perceptual information in children and young people with cerebral palsy.
- Identifying social care needs that are specific to children and young people with cerebral palsy and their family members and carers.
- Communication, information and support needs that are specific to children and young people with cerebral palsy and their family members and carers.
- The role of the multidisciplinary team in the care of children and young people with cerebral palsy.
- Aspects of the transition from paediatric to adult health services that are specific to the needs of young people with cerebral palsy and their family members and carers.
Note that guideline recommendations will normally fall within licensed indications. Exceptionally, and only if clearly supported by evidence, use outside a licensed indication may be recommended. This guideline will assume that prescribers will use a drug’s summary of product characteristics to inform decisions made with individual patients.
For further details please refer to the scope in Appendix A and review questions in Appendix D.
2.5. What this guideline does not cover
2.5.1. Groups that will not be covered
This guideline does not cover:
- Adults 25 years and older.
- Children and young people with a progressive neurological or neuromuscular disorder.
2.5.2. Clinical issues that will not be covered
This guideline does not cover:
- Management of spasticity and co-existing motor disorders.
- Skin care, including management of pressure ulcers.
- Laboratory investigations for progressive neurological and neuromuscular disorders.
- Management of cognitive impairment and learning difficulties.
- Management of bladder dysfunction (urinary retention and incontinence) and bowel dysfunction (constipation and soiling).
- Management of gastro-oesophageal reflux disease.
- Management of respiratory complications such as pulmonary aspiration.
- Management of visual and hearing impairment.
- Management of epilepsy.
2.6. Relationships between the guideline and other NICE guidance
2.6.1. Related NICE guidance
2.6.1.1. Published
- Transition from children’s to adult services (2016) NICE guideline NG43
- Challenging behaviour and learning disabilities (2015) NICE guideline NG11
- Gastro-oesophageal reflux disease in children and young people (2015) NICE guideline NG1
- Pressure ulcers (2014) NICE guideline CG179
- Intrapartum care (2014) NICE guideline CG190
- Gastro-oesophageal reflux disease and dyspepsia in adults (2014) NICE guideline CG184
- Obesity (2014) NICE guideline CG189
- Vitamin D: increasing supplement use in at-risk groups (2014) NICE public health guidance PH56
- Autism in under 19s (2013) NICE guideline CG170
- Antisocial behaviour and conduct disorders in children and young people (2013) NICE guideline CG158
- Headaches in over 12s (2012) NICE guideline CG150
- Urinary incontinence in neurological disease (2012) NICE guideline CG148
- Osteoporosis in adults (2012) NICE guideline CG146
- Spasticity in under 19s (2012) NICE guideline CG145
- Autism in adults (2012) NICE guideline CG142
- Patient experience in adult NHS services (2012) Nice guideline GC 138
- Epilepsies (2012) NICE guideline CG137
- Autism in under 19s (2011) NICE guideline CG128
- Common mental health problems (2011) NICE guideline CG123
- Generalised anxiety disorder and panic disorder in adults (2011) NICE guideline CG113
- Selective dorsal rhizotomy for spasticity in cerebral palsy (2010) NICE interventional procedure guidance 373
- Constipation in children and young people (2009) NICE guideline CG99
- Depression in adults (2009) NICE guideline CG90
- Low back pain in adults (2009) NICE guideline CG88
- Attention deficit hyperactivity disorder (2008) Nice guideline CG72
- Urinary tract infection in under 16s (2007) NICE guideline CG54
- Obesity prevention (2006) NICE guideline CG43
- Postnatal care up to 8 weeks after birth (2006) NICE guideline CG37
- Nutrition support for adults (2006) NICE guideline CG32
- Depression in children and young people (2005) NICE guideline CG28
2.6.1.2. In development
- Mental health problems in people with learning disabilities. NICE guideline. Publication due September 2016
- Developmental follow-up of pre-term babies. NICE guideline. Publication due August 2017.
- Faltering growth. NICE guideline. Publication due October 2017.
- Development of the guideline - Cerebral palsy in under 25s: assessment and manag...Development of the guideline - Cerebral palsy in under 25s: assessment and management
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