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Engaging underserved communities in end-of-life conversations: a cluster, randomized controlled trial

Award Number: R01MD014141
ORGANIZATION: NATIONAL CENTER ON MINORITY HEALTH AND HEALTH DISPARITIES
OPDIV: NIH
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

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Engaging underserved communities in end-of-life conversations: a cluster, randomized controlled trial - Many Black/African Americans and Hispanic/Latinx patients are much more likely to receive low quality end-of- life medical care than White individuals– in fact, they are 3 times more likely than white Americans to die after a lengthy intensive care unit stay. Advance care planning (ACP)– the process of discussing one’s wishes with loved ones and clinicians, and then documenting them in an advance directive (AD)– can help reduce these health inequities by preventing costly/burdensome treatments that are unlikely to reduce suffering or improve quality of life. Though ~60% of Americans engage in ACP, <25% of underserved populations have done so– in large part due to distrust of the healthcare system/clinicians, and reluctance to discuss death and dying. This study harnesses underserved communities’ existing, trusted social networks to deploy two community-based ACP interventions and study their mechanisms of action. By identifying which interventions increase engagement in ACP in underserved communities (and why), this project will help improve quality of end-of-life care, reduce unnecessary suffering, and end-of-life healthcare costs which conserves public health resources. Over the past 5 years, our team has studied an inexpensive and readily scalable serious game called Hello that prompts discussion of sensitive end-of-life issues. Across multiple studies, participants report that playing Hello is enjoyable, eye-opening, and motivating —98% of participants subsequently performed at least 1 ACP behavior. Recently, we developed a nationwide community-based delivery model for ‘Hello’ and confirmed the game’s acceptability by engaging 53 underserved communities in ACP (n=1,165). We now propose a 3- armed, cluster, randomized controlled trial (RCT) in diverse, underserved populations to compare the efficacy of ‘Hello’ (Group 1) with a nationally promoted structured workbook ‘The Conversation Project Starter Kit,’ (Group 2), and a non-ACP game called ‘Table Topics,’ (placebo/attention control; Group 3). We will randomize 75 underserved communities across the US (20 participants/site; n=1,500). The primary outcome is completion of a visually verified AD; secondary outcomes include performance of other ACP behaviors. This study will provide key scientific advancements by: 1) providing efficacy data on two widely used and easily scalable but not yet evidence-based interventions; 2) advancing the science of interventional design by examining the interventions’ potential mechanisms of action (i.e. quality of communication, and role of socio- cultural environment); and 3) assessing how and why our community-based delivery model engages underserved communities in ACP. Should the RCT have negative findings, we still will have gained a robust understanding of the sociocultural environment’s role in population health research. If successful, this project will provide an evidence-based model for engaging underserved communities in ACP, along with a robust understanding of how to design and deliver community-based initiatives relevant for other population health- based research or initiatives for the underserved.


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2025 ( Subtotal = $593,728 )
2025	2025	PENNSYLVANIA STATE UNIVERSITY	500 UNIVERSITY DRIVE	HERSHEY	PA	17033	DAUPHIN	USA	Minority Health and Health Disparities Research	000	5	12/24/2024	NON-COMPETING CONTINUATION	$593,728
														Subtotal = $593,728

Issue Date FY: 2024 ( Subtotal = $672,362 )
2024	2024	PENNSYLVANIA STATE UNIVERSITY	500 UNIVERSITY DRIVE	HERSHEY	PA	17033	DAUPHIN	USA	Minority Health and Health Disparities Research	001	4	4/9/2024	NON-COMPETING CONTINUATION	$0
2024	2024	PENNSYLVANIA STATE UNIVERSITY	500 UNIVERSITY DRIVE	HERSHEY	PA	17033	DAUPHIN	USA	Minority Health and Health Disparities Research	000	4	12/22/2023	NON-COMPETING CONTINUATION	$605,128
2024	2024	PENNSYLVANIA STATE UNIVERSITY	500 UNIVERSITY DRIVE	HERSHEY	PA	17033	DAUPHIN	USA	Minority Health and Health Disparities Research	002	4	6/13/2024	NON-COMPETING CONTINUATION	$67,234
														Subtotal = $672,362

Issue Date FY: 2023 ( Subtotal = $677,156 )
2023	2023	PENNSYLVANIA STATE UNIVERSITY, THE	500 UNIVERSITY AVE RM C1607	HERSHEY	PA	17033	DAUPHIN	USA	Minority Health and Health Disparities Research	001	3	12/8/2022	NON-COMPETING CONTINUATION	$609,441
2023	2023	PENNSYLVANIA STATE UNIVERSITY, THE	500 UNIVERSITY AVE RM C1607	HERSHEY	PA	17033	DAUPHIN	USA	Minority Health and Health Disparities Research	002	3	2/6/2023	NON-COMPETING CONTINUATION	$67,715
2023	2022	PENNSYLVANIA STATE UNIVERSITY, THE	500 UNIVERSITY AVE RM C1607	HERSHEY	PA	17033	DAUPHIN	USA	Minority Health and Health Disparities Research	000	2	11/4/2022	SUPPLEMENT FOR EXPANSION	$0
														Subtotal = $677,156

Issue Date FY: 2022 ( Subtotal = $379,878 )
2022	2022	PENNSYLVANIA STATE UNIVERSITY, THE	500 UNIVERSITY AVE RM C1607	HERSHEY	PA	17033	DAUPHIN	USA	Minority Health and Health Disparities Research	001	2	6/19/2022	SUPPLEMENT FOR EXPANSION	$379,878
2022	2021	PENNSYLVANIA STATE UNIVERSITY, THE	500 UNIVERSITY AVE RM C1607	HERSHEY	PA	17033	DAUPHIN	USA	Minority Health and Health Disparities Research	000	2	5/17/2022	NON-COMPETING CONTINUATION	$0
														Subtotal = $379,878

Issue Date FY: 2021 ( Subtotal = $678,390 )
2021	2021	PENNSYLVANIA STATE UNIVERSITY, THE	500 UNIVERSITY AVE RM C1607	HERSHEY	PA	17033	DAUPHIN	USA	Minority Health and Health Disparities Research	001	2	6/12/2021	NON-COMPETING CONTINUATION	$678,390
2021	2020	PENNSYLVANIA STATE UNIVERSITY, THE	500 UNIVERSITY AVE RM C1607	HERSHEY	PA	17033	DAUPHIN	USA	Minority Health and Health Disparities Research	000	1	12/15/2020	NEW	$0
														Subtotal = $678,390

Issue Date FY: 2020 ( Subtotal = $710,835 )
2020	2020	PENNSYLVANIA STATE UNIVERSITY, THE	500 UNIVERSITY DR C1607	HERSHEY	PA	17033	DAUPHIN	USA	Minority Health and Health Disparities Research	000	1	9/17/2020	NEW	$710,835
														Subtotal = $710,835

Grand Total All Awards = $3,712,349

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Engaging underserved communities in end-of-life conversations: a cluster, randomized controlled trial

Award Number: R01MD014141

ORGANIZATION: NATIONAL CENTER ON MINORITY HEALTH AND HEALTH DISPARITIES

OPDIV: NIH

AWARD CLASS: DISCRETIONARY

AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

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