Malignant Central Nervous System Neoplasm, Metastatic Malignant Neoplasm in the Central Nervous System
Conditions
Brief summary
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.
Detailed description
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.
Interventions
OTHERNon-Interventional Study
Non-Interventional Study
Sponsors
Mayo Clinic
Study design
Observational model
CASE_ONLY
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
* \* 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.
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. * Note: English does not need to be primary language.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Patient experience | 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 | 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 | 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 | 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 | 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 |
Countries
United States
Contacts
PRINCIPAL_INVESTIGATORUgur T. Sener, MD
Mayo Clinic in Rochester
Outcome results
None listed