Posterior Fossa Mutism on Quality of Life

N/ACompletedNCT02048176

Ann & Robert H Lurie Children's Hospital of Chicago24 enrolled

Overview

Posterior fossa mutism (PFM) occurs in up to 30% of patients after resection of a posterior fossa tumor, most commonly a medulloblastoma. PFM is characterized by delayed onset of mutism 1-6 days after surgery that can spontaneously improve on average from 7-8 weeks later. Few patients recover normal speech. Most of their speech continues to be marked by dysarthria, dysfluency and slowed rate. Researchers have not identified the pathophysiologic mechanism for PFM nor have they found a cure. Despite the improvements in speech, patients with PFM have shown multiple areas of neurocognitive deficits 12 months after diagnosis. Few studies have looked at long term outcomes of patients affected by PFM. We propose to survey patients who developed PFM after resection of a medulloblastoma to determine long term effects of PFM on patient's quality of life.

Study Type

OBSERVATIONAL

Enrollment

Conditions

Posterior Fossa Mutism

Eligibility

Sex: ALLMin age: 8 YearsMax age: 25 Years

Medical Language ↔ Plain English

Inclusion Criteria: Patients must be between 8 years and 25 years of age at the time of enrollment and have completed treatment for their initial diagnosis of medulloblastoma. Exclusion Criteria: 1. Patient is less than 8 years old or greater than 25 years old at the time of the administration of the survey. 2. Patients are too ill to complete the survey as identified by their treating physician. 3. Patients who are unable to speak or understand English. 4. Patients who are currently being treated for their original diagnosis of medulloblastoma.

Locations (1)

Outcomes

Primary Outcomes

Quality of Life

Time frame: Thirty minutes, no follow-up.

Secondary Outcomes

quality of life in terms of anger, anxiety, depression, fatigue, social functioning, pain and stigma

Time frame: 30 minutes, no follow-up