Dr Kola Tytler MBBS CertHE MBA MRCGPClinical Lead • iatroX
Recommended surveillance protocols for patients with Neurofibromatosis to monitor for complications include:
- Regular clinical review to assess for neurological, cognitive, and psychological changes, given the risk of brain tumours and other neurological complications associated with Neurofibromatosis NICE NG99.
- Imaging surveillance such as MRI is preferred over CT scans for brain monitoring, especially in younger patients, to detect tumours or complications early NICE NG99,NICE NG14.
- Assessment and monitoring for late effects of any cranial radiotherapy received, including screening for cataracts, cognitive decline, epilepsy, hearing loss, hypopituitarism, neuropathy, secondary tumours, and stroke-like events NICE NG99.
- Regular endocrine function tests if there is a history of radiotherapy affecting the pituitary gland NICE NG99.
- Referral for ophthalmological assessment if there is risk of visual impairment and audiology assessment if there is risk of hearing loss NICE NG99.
- Monitoring for urinary tract complications if neurogenic bladder dysfunction is present, including symptom awareness and use of urodynamic studies in high-risk patients NICE CG148.
- Encouragement of healthy lifestyle measures to reduce stroke risk, including blood pressure, HbA1c, and cholesterol monitoring in those at risk NICE NG99.