Clinical Trial: Posterior Fossa Mutism on Quality of Life

Study Status: Completed
Recruit Status: Completed
Study Type: Observational

Official Title: Long-Term Impact of Posterior Fossa Mutism on Quality of Life

Brief Summary: 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.

Detailed Summary:
Sponsor: Ann & Robert H Lurie Children's Hospital of Chicago

Current Primary Outcome: Quality of Life [ Time Frame: Thirty minutes, no follow-up. ]

Original Primary Outcome: Same as current

Current Secondary Outcome: quality of life in terms of anger, anxiety, depression, fatigue, social functioning, pain and stigma [ Time Frame: 30 minutes, no follow-up ]

Original Secondary Outcome: Same as current

Information By: Ann & Robert H Lurie Children's Hospital of Chicago

Dates:
Date Received: January 27, 2014
Date Started: July 2011
Date Completion:
Last Updated: February 3, 2016
Last Verified: February 2016