UBRT21040 / Early START / Sara HardyResearch Question:
Basic Study Information
Purpose:Location: University of Rochester
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.
Lead Researcher (Principal Investigator)
Study Contact Information
Study Contact: Clinical Trials Office
Study Location: Wilmot Cancer Institute, University of Rochester Medical Center
Study Email: WCICTOResearch@urmc.rochester.edu
Additional Study Details
Trial Not Found
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