Patient and Caregiver Priorities in Neuro-oncology Care

Patient and Caregiver Priorities in Neuro-Oncology Care

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.

Study Overview

• Status: Completed
• Conditions: Malignant Central Nervous System Neoplasm; Metastatic Malignant Neoplasm in the Central Nervous System
• Intervention / Treatment: Other: Non-Interventional Study

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.

• Study Type: Observational
• Enrollment (Actual): 33

Contacts and Locations

Study Locations

• United States
  • Minnesota
    • Rochester, Minnesota, United States, 55905
      • Mayo Clinic in Rochester

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult; Older Adult
• Accepts Healthy Volunteers: Yes

• Sampling Method: Non-Probability Sample

Study Population

Patients with a diagnosis of primary or metastatic CNS tumor with a primary caregiver.

Description

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.

Study Plan

How is the study designed?

Number of groups / cohorts

1

Cohorts and Interventions

Group / Cohort	Intervention / Treatment
Observational; Patients and their caregivers participate in interviews on study. Patients also have their medical records reviewed on study.	Other: Non-Interventional Study; Non-Interventional Study

What is the study measuring?

Primary Outcome Measures

Outcome Measure	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

Collaborators and Investigators

• Sponsor: Mayo Clinic
• Investigators: Principal Investigator: Ugur T. Sener, MD, Mayo Clinic in Rochester

Publications and helpful links

Helpful Links

• Mayo Clinic Clinical Trials

Study record dates

Study Major Dates

• Study Start (Actual): April 24, 2024
• Primary Completion (Actual): January 22, 2026
• Study Completion (Actual): January 22, 2026

Study Registration Dates

• First Submitted: November 4, 2024
• First Submitted That Met QC Criteria: November 4, 2024
• First Posted (Actual): November 6, 2024

Study Record Updates

• Last Update Posted (Actual): April 1, 2026
• Last Update Submitted That Met QC Criteria: March 31, 2026
• Last Verified: March 1, 2026

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Nervous System Diseases; Neoplasms by Site; Neoplasms; Nervous System Neoplasms; Central Nervous System Neoplasms
• Other Study ID Numbers: 24-000229 (Mayo Clinic Institutional Review Board); NCI-2024-09052 (Registry Identifier: CTRP (Clinical Trial Reporting Program))

Drug and device information, study documents

• product manufactured in and exported from the U.S.: No