Cerebral palsy in adults: a summary of recommendations from NICE

Guideline name: Cerebral palsy in adults [NG119]

Update type: New guideline

Published: Jan 2019

Takehome

• The latest NICE guidance focusses on care and support for adults with cerebral palsy (CP) with the aim of improving their health and wellbeing, independent living, and accessibility to services.

Principles of Care

• Adults with CP should be referred to a multidisciplinary team experienced in the managing neurological impairments if:
  • They are unable to perform usual daily activities adequately or;
  • A neurosurgical or orthopaedic procedure is being considered which may impair the performance of usual daily activities.
• The multidisciplinary team needs to reassess the patient's needs at different points in their life.
• Offer an annual review of the person's clinical and functional needs, carried out by a healthcare professional with expertise in neurodisabilities, for people with cerebral palsy who have complex needs, and any of the following:
  • Communication difficulties
  • Learning disabilities
  • Living in long-term care settings or in the community without sufficient practical and social support
  • Multiple comorbidities.
• Identify and address mental health issues in CP patients. Any concerns about mood, irritability, behaviour, social interaction, sleep and general level of function should be discussed with patients, families, and carers.
• CP patients should be offered regular weight check, and BMI or another anthropometric measurement. Enquire about eating difficulties or any changes in their eating habits or bowel function
• Discuss the importance of physical activity in maintaining fitness and physical and mental health with CP patients.
• Refer CP patients to services including physiotherapy, occupational therapy, orthotic and functional electronic stimulation services, rehabilitation engineering services, and wheelchair services if and when required.
• Vaccinations are recommended for adults with CP and their carers, in line with the National immunisation programme.

Speech and Language

• Speech and communication needs in CP patients may keep changing. Enquire about any changes in their hearing, speech and communication during every review. Any need for alternative and augmentative communication systems should be determined.
• It may be challenging for some individuals with CP to communicate that they have pain. Assessment of the pain using tools such as numerical rating scales, visual analogue scales, faces pain scales and body maps is recommended.
• Discuss the potential role of electronic assistive technology to help CP patients, particularly those with complex physical, cognitive, language or sensory needs.

Spasticity and Dystonia

• CP patients may have both spasticity and dystonia. It is essential to identify and address any modifiable factors which may worsen the spasticity or dystonia.

• Spasticity
  • First-line treatment for generalised spasticity is enteral baclofen. Those refractory to baclofen should receive referral to tone or spasticity management service or other drug treatment options.
  • Diazepam is not recommended unless there is severe pain and anxiety. Rapid withdrawal of muscle relaxants is not recommended.
  • Botulinum toxin type A is suitable if there is spasticity in a limited number of muscle groups.
• Dystonia
  • Refer CP patients with problematic dystonia to a tone or spasticity management service to consider treatment options.

Respiratory

• CP patients may be at increased risk of respiratory failure. Watch out for symptoms like dyspnoea, behavioural changes, daytime drowsiness, worsening epilepsy, headaches on waking, frequent chest infections, poor sleep pattern, and sleep apnoea.
• Prophylactic antibiotics are not recommended for lower respiratory tract infections in CP patients unless there is a high risk of respiratory impairment or if prescribed by a respiratory specialist with expertise in neurodisability management.
• If CP patients with recurrent chest infections have dysphagia, refer to a speech and language specialist trained in dysphagia management.

Musculoskeletal

• CP patients may experience a gradual deterioration of musculoskeletal function. Early recognition of bone and joint disorders is necessary to improve outcomes.
• CP patients are likely to have a low bone mineral density. It is important to assess the risk for fractures secondary to osteoporosis. Consider a dual-energy X-ray absorptiometry (DXA) assessment if there are ≥2 risk factors.
• Referral to a specialist orthopaedic or musculoskeletal service is recommended if there is suspicion of osteoarthritis cervical instability or spondylosis, spinal deformity, subluxation (hips, wrist and shoulders), biomechanical knee problems, or abnormalities of the foot structure.

This summary is reviewed by Prof. Rishabh Prasad MBBS, MA, MSC, FRCGP FRSA FFCI