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

RECRUITINGN/ASponsored by University of Rochester
Actively Recruiting
PhaseN/A
SponsorUniversity of Rochester
Started2021-10-08
Est. completion2026-07-31
Eligibility
Age18 Years+
Healthy vol.Accepted
Locations1 site

Summary

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.

Eligibility

Age: 18 Years+Healthy volunteers accepted
Inclusion Criteria:

* New pathologic diagnosis of WHO grade III or IV glioma within four months of consent
* English speaking

Exclusion Criteria:

* Severe cognitive dysfunction or aphasia precluding discussion of advanced care planning issues

Conditions2

CancerGlioma

Locations1 site

University of Rochester
Rochester, New York, 14642
Jessica Ellis5852752224Sara_Hardy@URMC.Rochester.edu

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