Patient and Caregiver Priorities in Neuro-oncology Care

Recruiting

• Conditions: Malignant Central Nervous System Neoplasm; Metastatic Malignant Neoplasm in the Central Nervous System

• Registration Number: NCT06676306
• Lead Sponsor: Mayo Clinic

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.

Study Timeline

• Study Start: 2024-04-24
• Study First Submitted: 2024-11-04
• Study First Submitted QC: 2024-11-04
• Study First Posted: 2024-11-06
• Status Verified: 2025-05
• Last Update Submitted: 2025-05-20
• Last Update Posted: 2025-05-25
• Primary Completion: 2026-04-30
• Study Completion: 2026-04-30

Recruitment & Eligibility

• Status: RECRUITING
• Sex: All
• Target Recruitment: 80

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 & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
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

Trial Locations

Locations (1)

Mayo Clinic in Rochester; 🇺🇸 Rochester, Minnesota, United States