Telehealth Visits to Discuss Advanced Directives for Patients Newly Diagnosed With High Grade Glioma

Part of paid clinical trials in Rochester, New York.

Sponsor
University of Rochester
Study ID
NCT04543201
Status
Recruiting
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Conditions

Eligibility Criteria

Sex
ALL
Age
18 Years - N/A
Healthy Volunteers
Not accepted

Interventions

  • Early START visit using checklist over telephone or zoom — BEHAVIORAL
    Prior to visit subject receives pre-visit educational guide and copy of advance directive form Follow up surveys: Immediate: provider feedback survey 2-4 weeks after visit: subject feedback survey and caregiver/family feedback survey After subject death: caregiver/family survey

Study Details

High grade gliomas (HGGs) are rapidly progressive brain tumors resulting in death for most patients between 6 months and 2 years after diagnosis. It is important for patients with HGG to discuss and document their wishes at the end of life. However, many of these patients experience early changes in cognition which impede their decision-making. For this reason, these patients should have early discussions with their providers. However, implementation of this remains challenging in clinical practice. In this study, we will create an Early STructured Advanced care Referrals by Telehealth (Early START) visit for patients soon after their initial oncology visit. A checklist and pre-visit guide were developed to help guide the visit for both the provider and patient. Providers will receive special training in running these visits. Caregivers and/or family members will be encouraged to participate. Visits will be done using video or telephone and recorded. For patients who do not have access to technology for these visits, it will be provided. After the visit, patients, caregivers and/or family who participated, and providers will fill out surveys to address feasibility of having these extra visits and improve the visits for future. Patients will be followed until death. Caregivers and/or family who participated will be asked about whether end of life was in line with the patient's wishes. We will also use the patient's medical record to assess other aspects of end of life. We will compare end of life outcomes with other similar patients treated at our center.

Key Dates

Start date
Oct 8, 2021
Status verified
Dec 2025
Primary completion
Jul 31, 2026
Completion
Jul 31, 2026

Study Design

Enrollment
50 participants (estimated)
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
SUPPORTIVE_CARE

Arms

  • Experimental: Early STructured Advanced care Referrals by Telehealth
    Early START visit using checklist over telephone or zoom: A telehealth visit conducted within 4 months of patient diagnosis, with the goal of encouraging patients to discuss and document their end-of-life wishes prior to the onset of cognitive impediments common among patients with late-stage high grade glioma.

Primary Outcome Measure

Advanced Directive Completion Rate [ Time Frame: Time of diagnosis to 3rd oncology visit at an average of 4 months ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
University of RochesterRochesterNew York14642
Jessica Ellis
[email protected]
5852752224

Find similar trials in Rochester, NY

By condition
Brain cancer
By specialty
OncologyNeuro-oncology
By research site
University of Rochester· Rochester, NY

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