Early START: A Prospective Study of Early Advanced Care Planning by Telehealth in Glioblastoma
Lauryn Hemminger1, Jacqueline Behr2, Jennifer Serventi2, Maxime Jean2, Kathryn Eszes2, Sara Hardy3, Benzi Kluger2, Nimish Mohile2
1Strong Memorial Hospital, 2University of Rochester Medical Center, 3University of Washington
Objective:
To evaluate the feasibility and preliminary efficacy of a prospective Early Structured Advanced Care Planning by Telehealth (Early START) for patients with glioblastoma (pGBM) and their care partners (CP).
Background:
Previous work demonstrated that pGBM have delayed advanced directive (AD) documentation and half of AD were completed by proxy due to early cognitive decline. We developed an innovative early advanced care planning (ACP) intervention. Preliminary retrospective data found improved AD completion with more pGBM completing their own AD (81% vs. 55%; p<0.01) compared to historical controls.
Design/Methods:
Providers underwent training to conduct standardized Early START visits (ESV). pGBM and CP consented for ESV within 4 months of diagnosis, received a pre-visit educational guide to increase ACP literacy, and underwent a provider-led ESV. Post-visit surveys were given to pGBM, CP and providers. ESV content, AD documentation, and end-of-life (EOL) quality measures were collected.
Results:
26 pGBM and 47 CP (range 0-6 per patient) completed ESV. Median time from diagnosis to ESV was 2.7 months and all were within 4 months. Average ESV was 66 minutes and 16/26 were completed via telemedicine. 100% of pGBM completed ACP documents within 4 months and none were by proxy (p<0.00001 compared to historical controls). 17/26 ESVs led to documentation of life-sustaining treatments. All providers stated that ESV improved understanding of patient values. 20/21 pGBM noted ESV prepared them for EOL decisions and all reported ESV enhanced autonomy. 21/21 pGBM and 32/33 CP recommend ESV; only 2 pGBM and CP felt the visit was too early. 31/33 CP felt they had improved understanding of their loved one's goals for medical care. Matured data regarding EOL quality measures will be presented.
Conclusions:
Early START, an innovative care model of ACP by telehealth, is feasible, enhances early and autonomous ACP and AD documentation, and is highly valued by pGBM, CP, and providers.
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