Patient and Caregiver Priorities in Neuro-oncology Care

NCT06676306 | Completed

• 1 other identifier: 24-000229
• Study Type: observational
• Target: 33
• Locations: 1 country
• Sites: 1

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.

Conditions

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

Outcome Measures

Primary Outcomes (5)

• 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

Study Arms (1)

Observational

Patients and their caregivers participate in interviews on study. Patients also have their medical records reviewed on study.

Other: Non-Interventional Study

Interventions

Non-Interventional Study OTHER

Non-Interventional Study

Observational

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

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

You may qualify if:

• \* 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.

You may not qualify if:

• \* 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.

Sponsors & Collaborators

• Mayo Clinic: lead

Study Sites (1)

Mayo Clinic in Rochester

Rochester, Minnesota, 55905, United States

Location

Related Links

• Mayo Clinic Clinical Trials

MeSH Terms

Conditions

Central Nervous System Neoplasms

Condition Hierarchy (Ancestors)

Nervous System Neoplasms; Neoplasms by Site; Neoplasms; Nervous System Diseases

Study Officials

• Ugur T. Sener, MD

  Mayo Clinic in Rochester

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: CASE ONLY
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: November 4, 2024
• First Posted: November 6, 2024
• Study Start: April 24, 2024
• Primary Completion: January 22, 2026
• Study Completion: January 22, 2026
• Last Updated: April 1, 2026

Record last verified: 2026-03

Locations

US (1)