Patient/family preparation and education for complications and late sequelae of craniopharyngiomas.

Craniopharyngiomas are the most common pediatric suprasellar tumor. While they are benign by histology, their location in the brain predisposes craniopharyngiomas to be associated with both acute and chronic neurologic, endocrine, visual, neuropsychologic and psychosocial problems. Because of the complexity of problems it is difficult to really prepare a patient and family for every complication or late effect that may occur with a craniopharyngioma diagnosis. Patient/family preparation for potential complications and late sequelae is an ongoing and labor-intensive process for all members of the multidisciplinary health care team. This paper will discuss this process and identify strategies for effective patient/family education for children with the diagnosis of craniopharyngioma.