What follow-up care and monitoring should I provide for patients recovering from autoimmune encephalitis?

The provided UK guidelines do not specifically cover follow-up care and monitoring for patients recovering from autoimmune encephalitis. However, they offer guidance on managing complications and providing follow-up for other severe neurological conditions, such as bacterial meningitis, brain tumours, and subarachnoid haemorrhage, which may involve similar types of care.

• Discharge Planning and Coordination: It is crucial to inform the patient's GP (and health visitor/school nurse if relevant) about the follow-up plans ¹. A main point of contact after discharge should be identified for the patient and their family or carers ¹. The follow-up plan for managing complications must be documented in the discharge summary ¹. The hospital team should coordinate with tertiary and primary care, other specialists, and allied professionals (e.g., audiology, speech and language therapy, psychology) for post-discharge care ¹. A follow-up care plan should be agreed upon and documented with the person, including who to contact at the specialist centre for ongoing advice and support ³.
• Comprehensive Assessment for Complications: Follow-up needs should identify potential cognitive, neurological, developmental, orthopaedic, skin, hearing, psychosocial, education, and renal complications ¹.
• Specific Monitoring and Referrals:
  • Neurological and Cognitive: Referrals for a medicines review should be made for people taking anti-epileptic drugs, 3 months after hospital discharge, with a clinician interested in epilepsy, an epilepsy specialist nurse, or a neurologist ¹. Children, young people, and adults should be referred to psychological services for cognitive and psychological support if follow-up needs are identified ¹. Ongoing neuropsychology assessment may be considered for people at risk of cognitive decline ². Babies, children, and young people should receive community neurodevelopmental follow-up ¹.
  • Sensory: An audiological assessment should be offered within 4 weeks of the person being well enough for testing, preferably before discharge ¹. Children, young people, and adults with severe or profound deafness should be offered an urgent assessment for cochlear implants ¹. People at risk of visual impairment should be considered for an ophthalmological assessment ². Those at risk of hearing loss should be considered for an audiology hearing test ².
  • Physical and Rehabilitation: For acute orthopaedic complications, follow-up with an orthopaedic surgeon should be arranged, and referral to psychological services considered ¹. Management of orthopaedic and skin complications should be coordinated with tissue viability and community nursing services, and referral to rehabilitation services considered as needed ¹. Rehabilitation should be offered in line with relevant guidelines ³.
  • Endocrine: If a person has had a radiotherapy dose that might affect pituitary function, regular endocrine function checks should be considered after treatment ².
  • Vascular and Stroke Risk: People who have had cranial radiotherapy should be encouraged to follow a healthy lifestyle to decrease stroke risk ². For those at risk of stroke, regular checks of blood pressure, HbA1c level, and cholesterol profile should be considered ². Referral to stroke services should be considered if an MRI identifies asymptomatic ischaemic stroke ².
  • Hydrocephalus: For people with persistent or progressive symptoms and a clinical diagnosis of chronic hydrocephalus, drainage or permanent diversion of cerebrospinal fluid should be considered ³.
  • Neuroimaging: Follow-up neuroimaging may be considered, taking into account recovery and suitability ³.
• Psychosocial Support: Referral to psychosocial support should be considered for patients and their family members and carers ¹.
• Information and Education: Patients should be informed about when they are likely to resume activities such as driving, travel, work, education, exercise, and sports, noting that timings may change based on follow-up assessments ¹. They should also be told how to access support, including meningitis charities, and what assessments, aftercare, and follow-up they will receive ¹.
• Long-term Surveillance: Be aware that people with brain tumours can develop late-onset side effects of treatment months or years later, including cognitive decline, epilepsy, hearing loss, hypopituitarism, neuropathy, and secondary tumours ². Individual risk of late effects should be assessed and recorded in their treatment summary ².