Patient and Caregiver Priorities in Neuro-oncology Care

Mayo Clinic33 enrolled

Overview

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.

Study Type

OBSERVATIONAL

Enrollment

Conditions

Malignant Central Nervous System Neoplasm Metastatic Malignant Neoplasm in the Central Nervous System

Interventions

Non-Interventional StudyOTHER

Non-Interventional Study

Eligibility

Sex: ALLMin age: 18 YearsHealthy volunteers:

Medical Language ↔ Plain English

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.

Locations (1)

Mayo Clinic in Rochester

Rochester, Minnesota, United States

Outcomes

Primary Outcomes

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.

Time frame: 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.

Time frame: 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.

Time frame: 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.

Time frame: 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

Time frame: Up to 6 months

Data from ClinicalTrials.gov

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