Patient and Caregiver Priorities in Neuro-Oncology Care
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 发起方
- Mayo Clinic
- 入组人数
- 80
- 试验地点
- 1
- 主要终点
- Patient experience
研究概览
简要总结
This study is being done to identify patient and caregiver burdens regarding their experience with diagnosis and treatment of CNS tumors. These results will help doctors find areas where patients and caregivers may need more support.
详细描述
PRIMARY OBJECTIVES:
I. Describe the patient experience and characterize the symptom burden related to primary or metastatic central nervous system tumors.
II. Describe the caregiver experience and caregiver needs related to patients with primary or metastatic central nervous system tumors. III. Establish which interventional treatment outcomes are important to patients and caregivers, within a wider understanding of their lived experience with CNS tumors and their treatment.
OUTLINE: This is an observational study.
Patients and their caregivers participate in interviews on study. Patients also have their medical records reviewed on study.
研究设计
- 研究类型
- Observational
- 观察模型
- Case Only
- 时间视角
- Prospective
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •* Age ≥ 18 years.
- •Diagnosis of primary or metastatic CNS tumor with a primary caregiver, should patient wish to involve one.
- •Willing and able to participate in a semi-structured interview lasting approximately 60 minutes. Dyad interviews conducted for participants who elect to involve a caregiver.
- •Willing and able to participate in a single follow-up interview. Dyad follow up interviews conducted for participants who elect to involve a caregiver.
排除标准
- •* Uncontrolled and/or intercurrent illness which limits participation in study interview.
- •Vulnerable populations: pregnant or nursing persons, prisoners, or persons lacking capacity for understanding.
- •Unable to read and speak English.
- •Note: English does not need to be primary language.
结局指标
主要结局
Patient experience
时间窗: Up to 6 months
Participant and caregiver interviews will be analyzed qualitatively and reported descriptively. Interviews will be analyzed to describe the patient experience related to primary or metastatic central nervous system (CNS) tumors.
Symptom burden related to primary or metastatic central nervous system tumors
时间窗: Up to 6 months
Participant and caregiver interviews will be analyzed qualitatively and reported descriptively. Interviews will be analyzed to characterize the symptom burden related to primary or metastatic central nervous system (CNS) tumors.
Caregiver experience
时间窗: Up to 6 months
Patient and caregiver interviews will be analyzed qualitatively using thematic analysis and reported descriptively. Interviews will be analyzed to characterize the caregiver experience related to primary or metastatic CNS tumors.
Caregiver needs
时间窗: Up to 6 months
Patient and caregiver interviews will be analyzed qualitatively using thematic analysis and reported descriptively. Interviews will be analyzed to characterize caregiver needs related to primary or metastatic CNS tumors.
Importance of treatment outcomes
时间窗: Up to 6 months
Patient and caregiver interviews will be analyzed qualitatively using thematic analysis and reported descriptively. Interviews will be analyzed to establish which interventional treatment outcomes are important to patients and caregivers, within a wider understanding of their lived experience with CNS tumors and their treatment
次要结局
未报告次要终点