Dr Kola Tytler MBBS CertHE MBA MRCGPClinical Lead • iatroX
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 NICE NG240. A main point of contact after discharge should be identified for the patient and their family or carers NICE NG240. The follow-up plan for managing complications must be documented in the discharge summary NICE NG240. 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 NICE NG240. 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 NICE NG228.
- Comprehensive Assessment for Complications: Follow-up needs should identify potential cognitive, neurological, developmental, orthopaedic, skin, hearing, psychosocial, education, and renal complications NICE NG240.
- 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 NICE NG240. Children, young people, and adults should be referred to psychological services for cognitive and psychological support if follow-up needs are identified NICE NG240. Ongoing neuropsychology assessment may be considered for people at risk of cognitive decline NICE NG99. Babies, children, and young people should receive community neurodevelopmental follow-up NICE NG240.
- Sensory: An audiological assessment should be offered within 4 weeks of the person being well enough for testing, preferably before discharge NICE NG240. Children, young people, and adults with severe or profound deafness should be offered an urgent assessment for cochlear implants NICE NG240. People at risk of visual impairment should be considered for an ophthalmological assessment NICE NG99. Those at risk of hearing loss should be considered for an audiology hearing test NICE NG99.
- Physical and Rehabilitation: For acute orthopaedic complications, follow-up with an orthopaedic surgeon should be arranged, and referral to psychological services considered NICE NG240. Management of orthopaedic and skin complications should be coordinated with tissue viability and community nursing services, and referral to rehabilitation services considered as needed NICE NG240. Rehabilitation should be offered in line with relevant guidelines NICE NG228.
- Endocrine: If a person has had a radiotherapy dose that might affect pituitary function, regular endocrine function checks should be considered after treatment NICE NG99.
- Vascular and Stroke Risk: People who have had cranial radiotherapy should be encouraged to follow a healthy lifestyle to decrease stroke risk NICE NG99. For those at risk of stroke, regular checks of blood pressure, HbA1c level, and cholesterol profile should be considered NICE NG99. Referral to stroke services should be considered if an MRI identifies asymptomatic ischaemic stroke NICE NG99.
- 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 NICE NG228.
- Neuroimaging: Follow-up neuroimaging may be considered, taking into account recovery and suitability NICE NG228.
- Psychosocial Support: Referral to psychosocial support should be considered for patients and their family members and carers NICE NG240.
- 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 NICE NG240. They should also be told how to access support, including meningitis charities, and what assessments, aftercare, and follow-up they will receive NICE NG240.
- 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 NICE NG99. Individual risk of late effects should be assessed and recorded in their treatment summary NICE NG99.