Monitoring

All patients require long-term follow-up using periodic brain magnetic resonance imaging scans. Regular endocrinologic follow-up is required in all patients with craniopharyngioma; ophthalmology follow-up postoperatively and at subsequent periodic intervals is also recommended.[8][21][24][49][50][64]

Most patients are followed every 6 to 12 months, recognizing that most recurrences occur relatively early (within the first several years). Patients with complications following treatment (hypothalamic syndrome, seizures, cognitive loss) may be followed on a more frequent basis. Patients are best managed by a multidisciplinary team, which may include a pediatrician or internist/primary care physician, endocrinologist, ophthalmologist, radiation oncologist, and neurosurgeon. Coordination of care may be challenging given the multiple specialties involved and is best managed at tertiary medical centers. Ideally, patients and families need a single contact person (physician or nurse), as care may seem fragmented and overly complicated. Having simple, direct lines of communication provides patients and families with a sense of continuity of care, and improves care in a complex condition.

Use of this content is subject to our disclaimer