Posterior Fossa Mutism on Quality of Life

Long-Term Impact of Posterior Fossa Mutism on Quality of Life

Status

Completed

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT02048176

Enrollment

Registered

2014-01-29

Start date

2011-07-31

Completion date

2012-03-31

Last updated

2024-08-28

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Posterior Fossa Mutism

Keywords

Mutism

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.

Interventions

None listed

Study design

Observational model

CASE_CONTROL

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

Age

8 Years to 25 Years

Healthy volunteers

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.

Design outcomes

Primary

Measure	Time frame
Quality of Life	Thirty minutes, no follow-up.

Secondary

Measure	Time frame
quality of life in terms of anger, anxiety, depression, fatigue, social functioning, pain and stigma	30 minutes, no follow-up

Countries

United States

Outcome results