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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.
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Observational | Patients and their caregivers participate in interviews on study. Patients also have their medical records reviewed on study. |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Non-Interventional Study | Other | Non-Interventional Study |
|
| Measure | Description | Time Frame |
|---|---|---|
| Patient experience | 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. | Up to 6 months |
| Symptom burden related to primary or metastatic central nervous system tumors | 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. | Up to 6 months |
| Caregiver experience | 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. | Up to 6 months |
| Caregiver needs | 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. | Up to 6 months |
| Importance of treatment outcomes | 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 | Up to 6 months |
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Inclusion Criteria:
* Age ≥ 18 years.
Exclusion Criteria:
* 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.
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Patients with a diagnosis of primary or metastatic CNS tumor with a primary caregiver.
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| Name | Affiliation | Role |
|---|---|---|
| Ugur T. Sener, MD | Mayo Clinic in Rochester | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Mayo Clinic in Rochester | Rochester | Minnesota | 55905 | United States |
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| Label | URL |
|---|---|
| Mayo Clinic Clinical Trials | View source |
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| ID | Term |
|---|---|
| D016543 | Central Nervous System Neoplasms |
| ID | Term |
|---|---|
| D009423 | Nervous System Neoplasms |
| D009371 | Neoplasms by Site |
| D009369 | Neoplasms |
| D009422 | Nervous System Diseases |
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