Long-Term Impact of Posterior Fossa Mutism on Quality of Life
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 24
- 试验地点
- 1
- 主要终点
- Quality of Life
研究概览
简要总结
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.
研究设计
- 研究类型
- Observational
- 观察模型
- Case Control
- 时间视角
- Prospective
入排标准
- 年龄范围
- 8 Years 至 25 Years（Child, Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •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.
排除标准
- •Patient is less than 8 years old or greater than 25 years old at the time of the administration of the survey.
- •Patients are too ill to complete the survey as identified by their treating physician.
- •Patients who are unable to speak or understand English.
- •Patients who are currently being treated for their original diagnosis of medulloblastoma.
结局指标
主要结局
Quality of Life
时间窗: Thirty minutes, no follow-up.
次要结局
- quality of life in terms of anger, anxiety, depression, fatigue, social functioning, pain and stigma(30 minutes, no follow-up)