Voices: Messages of Wisdom and Hope in the Face of Illness

January 23, 2026 updated by: Mayo Clinic
This study may help doctors determine where patients and caregivers may need more support and identify ways to maintain patient and caregiver dignity while undergoing treatment.

Study Overview

Status

Recruiting

Conditions

Intervention / Treatment

Detailed Description

PRIMARY OBJECTIVE:

I. Change in patient dignity impact scale scores prior to and after completion of patient and caregiver recordings.

OUTLINE: This is an observational study.

Patients and their caregivers complete an interview and survey on study. Patients also have their medical records reviewed on study.

Study Type

Observational

Enrollment (Estimated)

40

Contacts and Locations

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

Study Contact

Study Contact Backup

  • Name: Susan Steinmetz
  • Phone Number: 507-266-5280

Study Locations

  • United States
    • Minnesota
      • Rochester, Minnesota, United States, 55905
        • Recruiting
        • Mayo Clinic in Rochester
        • Contact:
        • Contact:
          • Susan Steinmetz
          • Phone Number: 507-266-5280
        • Principal Investigator:
          • Ugur Sener, MD

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

Diagnosis of chronic or progressive illness with a primary caregiver, should patient wish to involve one.

Description

Inclusion Criteria:

  • Age ≥ 18 years
  • Diagnosis of chronic or progressive illness with a primary caregiver, should patient wish to involve one
  • Willing and able to participate in a semi-structured recording lasting approximately 60 minutes. Dyad recordings conducted for participants who elect to involve a caregiver
  • Willing and able to participate in a single follow-up recording. Dyad follow up recordings conducted for participants who elect to involve a caregiver

Exclusion Criteria:

  • Uncontrolled and/or intercurrent illness which limits participation in study recording
  • Vulnerable populations: persons lacking capacity for understanding participation in this study

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 complete an interview and survey on study. Patients also have their medical records reviewed on study.
Other: Non-Interventional Study
Non-interventional study
Other Names:
  • Non-Interventional Observational Study
  • Noninterventional (Observational) Study

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Change in patient dignity impact
Time Frame: Baseline (before and after recording)
Will assess patient dignity impact scale scores prior to and after completion of patient and caregiver recordings. The dignity impact scale (DIS) is a 7-item questionnaire with responses scaling from 1 (strongly disagree) to 5 (strongly agree). Higher scores indicate greater levels of dignity. Patient participants will complete the survey before and after their recordings as outlined in the schedule of events. Surveys will be completed digitally.
Baseline (before and after recording)

Collaborators and Investigators

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

Sponsor

Mayo Clinic

Investigators

  • Principal Investigator: Ugur Sener, MD, Mayo Clinic

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)

November 13, 2025

Primary Completion (Estimated)

December 13, 2027

Study Completion (Estimated)

December 13, 2027

Study Registration Dates

First Submitted

January 23, 2026

First Submitted That Met QC Criteria

January 23, 2026

First Posted (Actual)

February 2, 2026

Study Record Updates

Last Update Posted (Actual)

February 2, 2026

Last Update Submitted That Met QC Criteria

January 23, 2026

Last Verified

January 1, 2026

More Information

Terms related to this study

Other Study ID Numbers

  • 25-006417 (Other Identifier: Mayo Clinic Institutional Review Board)
  • NCI-2026-00073 (Registry Identifier: CTRP (Clinical Trial Reporting Program))

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

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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