Patient and Caregiver Priorities in Neuro-oncology Care

March 31, 2026 updated by: Mayo Clinic

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

Intervention / Treatment

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

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

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

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

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

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

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
Time Frame: 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.
Up to 6 months
Symptom burden related to primary or metastatic central nervous system tumors
Time Frame: 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.
Up to 6 months
Caregiver experience
Time Frame: 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.
Up to 6 months
Caregiver needs
Time Frame: 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.
Up to 6 months
Importance of treatment outcomes
Time Frame: 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
Up to 6 months

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Mayo Clinic

Investigators

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

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

Helpful Links

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

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

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

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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