Grant Number:	5R21CA234708-02 Interpret this number
Primary Investigator:	Volandes, Angelo
Organization:	Massachusetts General Hospital
Project Title:	Videos for Advance Care Planning in Young Adults
Fiscal Year:	2020

ABSTRACT According to the most recent data, 72% of adolescents and young adults (AYA) with advanced cancer die in the intensive care unit without receipt of palliative care, despite the evidence suggesting palliative care improves the dying experience. The Institute of Medicine report "Dying in America" called for the development of interventions to increase effective advance care planning (ACP) and shared decision making among AYA. Such interventions aim to help AYA participate actively in their health care decision making and thereby receive medical care "consistent with their values, goals, and informed preferences." Traditional ACP relies on clinicians' ad hoc verbal descriptions of treatment options. This approach is limited because in patients of all ages goals-of-care options are difficult to envision, information provided to patients is variable, and verbal explanations of medical care and interventions are less effectual given literacy and language barriers. Additionally, AYA are at a unique developmental stage, with emerging independence and potential dismissal of authority combined with a sense of invulnerability, making use of new communication strategies even more important in this population. AYAs may uniquely benefit from use of technology to augment information provided by traditional medical interactions. Our research group has developed and studied video decision support tools to assist patients with serious illness in making important decisions about their medical care. Video can improve decision making by providing visual information to present complex medical and emotional scenarios; a growing body of evidence supports the feasibility and effectiveness of using video aids in medical decision making. Video enhances patients’ understanding of complex health information by providing realistic visual images that can facilitate their education about hospitalizations, ICU admissions, and medical procedures, such as resuscitation and intubation, as well as the use of palliative care services. We have developed a video decision aid for AYA patients with serious illness. The tool reviews treatment preference and goals of care for AYA with advanced cancer. The overall objective of this R21 proposal is to conduct a randomized controlled trial of the video (vs. enhanced usual care) in 50 dyads of AYA with advanced cancer and their caregivers. Our hypothesis is that the video better informs patients and caregivers of their options, leads to more ACP conversations, engagement and documentation, and leads to more congruent decision making between AYA and caregivers. Demonstrating the effectiveness of using a video decision aid first in this pilot provides evidence for conducting a larger, multi-site trial integrating such a video into clinical practice.





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