Hematopoietic and Lymphatic System Neoplasm, Malignant Solid Neoplasm
Conditions
Brief summary
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.
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.
Interventions
OTHERNon-Interventional Study
Non-interventional study
Sponsors
Mayo Clinic
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Change in patient dignity impact | 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. |
Countries
United States
Contacts
CONTACTClinical Trials Referral Office
CONTACTSusan Steinmetz
PRINCIPAL_INVESTIGATORUgur Sener, MD
Mayo Clinic
Outcome results
None listed