Project Talk Trial: Engaging Underserved Communities in End-of-life Conversations

NCT ID: NCT04612738

Last Updated: 2025-11-14

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Clinical Phase

NA

Total Enrollment

1500 participants

Study Classification

INTERVENTIONAL

Study Start Date

2022-03-19

Study Completion Date

2026-01-31

Brief Summary

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Compared to the general population, individuals from underserved communities are more likely to receive low quality end-of-life care and unwanted, costly and burdensome treatments due in part to a lack of advance care planning (ACP; the process of discussing wishes for end-of-life care with loved ones/clinicians and documenting them in advance directives).

This study will use existing, trusted, and respected social networks to evaluate two conversation-based tools intended to engage underserved individuals in discussions about end-of-life issue and motivate them to carry out ACP behaviors.

Through this study, investigators will learn how best to engage underserved populations in ACP so as to: 1) increase the likelihood that patients from underserved communities will receive high-quality end-of-life care; 2) address health disparities related to end-of-life treatments; and 3) reduce unnecessary suffering for patients and their families.

Detailed Description

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The overall project goal of this 3-armed cluster, randomized control trial in underserved, diverse communities is to determine whether playing a serious conversation game called Hello is more effective than other advance care planning (ACP) approaches, or usual care (i.e., simply distributing an advance directive \[AD\]). The investigators will randomize 75 underserved communities across the US. The primary outcome is completion of a visually verified AD; secondary outcomes include performance of other ACP behaviors.

Many Black/African Americans and Latina/Latino patients are 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 leverages 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.

Conditions

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Advance Care Planning Advance Directives Terminal Illness Chronic Illness Communication

Keywords

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serious games

Study Design

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Allocation Method

RANDOMIZED

Intervention Model

PARALLEL

This is a 3-armed, cluster randomized controlled trial that will compare the efficacy of two evidenced based interventions, with a nationally-promoted structured workbook, Conversation Project (CP) Starter Kit; and use of a Placebo/Attention control, non-ACP game called Table Topics. The primary outcome is completion of an advance directive 6 months post-intervention.
Primary Study Purpose

OTHER

Blinding Strategy

SINGLE

Investigators
The principal investigator and statistical teams will be blinded to the allocation of study participants to the study arms.

Study Groups

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Group 1:Advance care planning conversation game, 'Hello'

The 'Hello' game is a commercially available serious game that consists of 32 questions prompting players to share their values, goals, and beliefs about end-of-life issues. The game is played with 4 - 5 players, with each receiving a game booklet and chips. A play reads the first question in the book. Then each player writes down their answers individually and takes turns sharing their answers with the group. Players control what they share, how long they share and when to move to the next questions. During the conversation, plays can acknowledge others for a thoughtful, poignant or even funny comments by giving them a chip. A pre-game coin flip determines whether the player with the most chips wins the game (heads) or player with the least chips win (tails) the game.

Other names; previously name "My Gift of Grace"

Group Type ACTIVE_COMPARATOR

Hello (serious game)

Intervention Type BEHAVIORAL

Commercially available, 'Hello' 32 is a serious game that consists of 32 questions prompting players to share their values, goals, and beliefs about end-of-life issues. The creators developed the questions following interviews with palliative care clinicians, hospice nurses, and funeral directors, and then revised them through a series focus groups with \>100 patients/caregivers from diverse backgrounds.

Group 2: The Conversation Project (CP) Starter Kit

The 'CP Starter Kit' (available for free online) is an 11-page workbook with open- ended prompts to consider one's values and preferences for end-of-life care, who to talk with about one's wishes, and suggestions on how to do so.

Group Type ACTIVE_COMPARATOR

The Conversation Project (CP) Starter Kit

Intervention Type BEHAVIORAL

The CP Starter Kit is one of the most widely promoted and disseminated ACP tools nationwide, is available for free online, and does not require a healthcare professional for use. Like 'Hello', it is intended to help individuals have end-of-life conversations with loved ones. The 11-page workbook has open- ended prompts to consider one's values and preferences for end-of-life care, who to talk with about one's wishes, and suggestions on how to do so. It also prompts participants to rank priorities on a 5-point scale (e.g., What are your concerns about treatment? 1= I'm worried I won't get enough care, 5= I'm worried I'll get overly aggressive care). The CP website provides resources for running a community event using the 'CP Starter Kit', including a 23-page manual, "Coaching the Conversation- A Guide to Facilitating Conversation Groups," with details on hosting a community-based program.

Group 3: Control Arm (Placebo control game, 'Table Topics')

A placebo/attention control l conversation game called 'Table Topics' will be used. Table Topics is a general conversation starter game that is unrelated to advance care planning. It involves answering open-ended questions in a group setting about a variety of topics.

Group Type PLACEBO_COMPARATOR

Table Topics (general conversation game)

Intervention Type OTHER

Table topics is a popular, commercially available conversation starter game that consists of question cards to prompt conversations (e.g., 'What do you love about your hometown?').

Interventions

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Hello (serious game)

Commercially available, 'Hello' 32 is a serious game that consists of 32 questions prompting players to share their values, goals, and beliefs about end-of-life issues. The creators developed the questions following interviews with palliative care clinicians, hospice nurses, and funeral directors, and then revised them through a series focus groups with \>100 patients/caregivers from diverse backgrounds.

Intervention Type BEHAVIORAL

The Conversation Project (CP) Starter Kit

The CP Starter Kit is one of the most widely promoted and disseminated ACP tools nationwide, is available for free online, and does not require a healthcare professional for use. Like 'Hello', it is intended to help individuals have end-of-life conversations with loved ones. The 11-page workbook has open- ended prompts to consider one's values and preferences for end-of-life care, who to talk with about one's wishes, and suggestions on how to do so. It also prompts participants to rank priorities on a 5-point scale (e.g., What are your concerns about treatment? 1= I'm worried I won't get enough care, 5= I'm worried I'll get overly aggressive care). The CP website provides resources for running a community event using the 'CP Starter Kit', including a 23-page manual, "Coaching the Conversation- A Guide to Facilitating Conversation Groups," with details on hosting a community-based program.

Intervention Type BEHAVIORAL

Table Topics (general conversation game)

Table topics is a popular, commercially available conversation starter game that consists of question cards to prompt conversations (e.g., 'What do you love about your hometown?').

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

1. Ability to recruit 20 individuals from underserved populations to attend a community event
2. Experience hosting a community event
3. Experience working with underserved populations
4. Participation in a series of mandatory live study-related web-based trainings
5. Completes a research site agreement

Research Participants

1. Adults over the age of 18 years old in underserved populations
2. Able to speak and read English and/or Spanish
3. Have not completed an AD within the previous 5 years
4. All participants regardless of health status
5. Individuals from the same household can enroll

Exclusion Criteria

1. Inability to recruit 20 individuals from underserved populations
2. Inexperience for hosting a community event
3. Inexperience working with underserved populations
4. Unable to attend a series of mandatory live study-related web-based trainings
5. Do not provide informed consent
6. Do not complete a research site agreement
7. Previously hosted a Hello project event

Research Participants

1. Anyone \<18 years of age
2. Anyone not able to speak and read English and/or Spanish
3. Have significant difficulties with hearing or speaking difficulties by self-report
4. Completed an AD in the past 5 years
5. Do not provide informed consent
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Hospice Foundation of America

UNKNOWN

Sponsor Role collaborator

University of Kentucky

OTHER

Sponsor Role collaborator

Milton S. Hershey Medical Center

OTHER

Sponsor Role lead

Responsible Party

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Lauren Van Scoy

Associate Professor of Medicine, Humanities, and Public Health Sciences; Co-director of Penn State Mixed Methods Core

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Lauren J. Van Scoy, MD

Role: PRINCIPAL_INVESTIGATOR

Penn State Milton S. Hershey Medical Center; Penn State University College of Medicine

Locations

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Pincham-Lincoln Community Center

Athens, Alabama, United States

Site Status COMPLETED

Kingman Regional Medical Center

Kingman, Arizona, United States

Site Status RECRUITING

Accord Health Group

Show Low, Arizona, United States

Site Status RECRUITING

El Rio Neighborhood Center

Tucson, Arizona, United States

Site Status COMPLETED

Promotores y Promotoras

Santa Paula, California, United States

Site Status COMPLETED

Our Lady of Solitude

Soledad, California, United States

Site Status COMPLETED

Vitas

Walnut Creek, California, United States

Site Status COMPLETED

University of Colorado Hospital

Aurora, Colorado, United States

Site Status COMPLETED

HopeWest Montrose

Montrose, Colorado, United States

Site Status COMPLETED

Stamford Senior Center

Stamford, Connecticut, United States

Site Status RECRUITING

MedStar Washington Hospital Center

Washington D.C., District of Columbia, United States

Site Status COMPLETED

DeSoto Memorial Hospital

Arcadia, Florida, United States

Site Status RECRUITING

High Point Neighborhood Family Center

Clearwater, Florida, United States

Site Status COMPLETED

St. Phillip AME Church

Tallahassee, Florida, United States

Site Status COMPLETED

City of Temple Terrace, Omar K. Lightfoot Center

Temple Terrace, Florida, United States

Site Status RECRUITING

47Million Reasons Healthcare Movement

West Palm Beach, Florida, United States

Site Status WITHDRAWN

Phoebe Putney Memorial Hospital

Albany, Georgia, United States

Site Status RECRUITING

Helene S. Mills

Atlanta, Georgia, United States

Site Status RECRUITING

Seniors First of GA

Atlanta, Georgia, United States

Site Status COMPLETED

Gilmer County Senior Center

Ellijay, Georgia, United States

Site Status RECRUITING

Colquitt Regional Medical Center

Moultrie, Georgia, United States

Site Status COMPLETED

University of Chicago Medical Ctr

Chicago, Illinois, United States

Site Status COMPLETED

St. Thomas the Apostle Catholic Church

Crystal Lake, Illinois, United States

Site Status COMPLETED

Lightways Hospice & Serious Illness Care

Joilet, Illinois, United States

Site Status COMPLETED

First Baptist Church

Quincy, Illinois, United States

Site Status RECRUITING

Trinity Lutheran Church

Cherokee, Iowa, United States

Site Status COMPLETED

Hospice & Home Care of Reno

Hutchinson, Kansas, United States

Site Status COMPLETED

Center for Practical Bioethics

Lawrence, Kansas, United States

Site Status COMPLETED

Ohio County Senior Centers

Hartford, Kentucky, United States

Site Status COMPLETED

Bluegrass Care Navigators

Lexington, Kentucky, United States

Site Status COMPLETED

United Crescent Hill Ministries

Louisville, Kentucky, United States

Site Status RECRUITING

Union County Senior Services

Morganfield, Kentucky, United States

Site Status COMPLETED

Hospice of Lake Cumberland

Somerset, Kentucky, United States

Site Status COMPLETED

Acadian Advocacy Network

Lafayette, Louisiana, United States

Site Status COMPLETED

St. Mary's Health System

Lewiston, Maine, United States

Site Status COMPLETED

East End Community Center

Portland, Maine, United States

Site Status RECRUITING

Good Hope Union UMC

Silver Spring, Maryland, United States

Site Status COMPLETED

Holy Cross Health

Silver Spring, Maryland, United States

Site Status COMPLETED

Grove Hall Senior Center

Boston, Massachusetts, United States

Site Status RECRUITING

Community Economic Development Center

New Bedford, Massachusetts, United States

Site Status COMPLETED

Christ Temple Church

Muskegon Heights, Michigan, United States

Site Status COMPLETED

Northeast Mississippi Coalition Against COVID-19

Belden, Mississippi, United States

Site Status COMPLETED

Elder Law Project of North Mississippi Rural Legal Services

Oxford, Mississippi, United States

Site Status COMPLETED

Columbia Senior Activity Center

Columbia, Missouri, United States

Site Status RECRUITING

Patch Center

St Louis, Missouri, United States

Site Status COMPLETED

Washoe Tribe Health Center

Gardnerville, Nevada, United States

Site Status COMPLETED

Reformed Church of Freehold

Freehold, New Jersey, United States

Site Status COMPLETED

Booker T. Washington CES

Las Cruces, New Mexico, United States

Site Status COMPLETED

Corsi Senior Center

New York, New York, United States

Site Status COMPLETED

Hospice of St. Lawrence Valley

Potsdam, New York, United States

Site Status COMPLETED

University of Rochester Medical Center

Rochester, New York, United States

Site Status COMPLETED

Greater Vision United Methodist Church

Huntersville, North Carolina, United States

Site Status COMPLETED

Plaza on Princess

Wilmington, North Carolina, United States

Site Status COMPLETED

Atrium Health Wake Forest Baptist

Winston-Salem, North Carolina, United States

Site Status COMPLETED

Cleveland Clinic

Akron, Ohio, United States

Site Status COMPLETED

Hospice of the Western Reserve

Cleveland, Ohio, United States

Site Status COMPLETED

McGregor Gardens

Cleveland, Ohio, United States

Site Status RECRUITING

Hope Behavioral Health

Cleveland, Ohio, United States

Site Status COMPLETED

Eastside Fellowship Ministries

Columbus, Ohio, United States

Site Status RECRUITING

Hospice Care of Middletown

Middletown, Ohio, United States

Site Status COMPLETED

Hospital Council of Northwest Ohio

Toledo, Ohio, United States

Site Status COMPLETED

Harney County Home Health & Hospice

Burns, Oregon, United States

Site Status WITHDRAWN

Stuart Community Center

Carlisle, Pennsylvania, United States

Site Status RECRUITING

Villa Schiano

Elizabethville, Pennsylvania, United States

Site Status COMPLETED

Latino Hispanic American Community Center

Harrisburg, Pennsylvania, United States

Site Status COMPLETED

People's Community Baptist Church

Harrisburg, Pennsylvania, United States

Site Status COMPLETED

Hospice and Community Care

Lancaster, Pennsylvania, United States

Site Status COMPLETED

Hospice and Community Care

Lancaster, Pennsylvania, United States

Site Status COMPLETED

St. Mark Missionary Baptist Church

Bennettsville, South Carolina, United States

Site Status COMPLETED

Welcome Home of Chattanooga

Chattanooga, Tennessee, United States

Site Status COMPLETED

All Saints Episcopal Church

Cameron, Texas, United States

Site Status COMPLETED

Turner Alumni Association

Carthage, Texas, United States

Site Status COMPLETED

Dorothea Street Community Center

Crane, Texas, United States

Site Status COMPLETED

Como Community Center

Fort Worth, Texas, United States

Site Status COMPLETED

Georgetown Public Library

Georgetown, Texas, United States

Site Status RECRUITING

Choice Hospice

Sulphur Springs, Texas, United States

Site Status COMPLETED

Sunshine Terrace Foundation

Logan, Utah, United States

Site Status COMPLETED

Luray Fire Department

Luray, Virginia, United States

Site Status COMPLETED

Carmel Baptist Church

Winchester, Virginia, United States

Site Status RECRUITING

Grayland Hall

Grayland, Washington, United States

Site Status RECRUITING

Ocean Beach Hospital

Ilwaco, Washington, United States

Site Status COMPLETED

Countries

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United States

Central Contacts

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Heather J Costigan

Role: CONTACT

Phone: 717-531-6499

Email: [email protected]

Lauren J. Van Scoy, MD

Role: CONTACT

Phone: 717-531-6704

Email: [email protected]

Facility Contacts

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Crystal Rapp

Role: primary

Susan Turner

Role: primary

Susan Stout

Role: primary

Michelle Munzner

Role: primary

Ronda Buffington

Role: primary

Gloria Esoimeme

Role: primary

Lisa Oliver

Role: primary

Media Bragg

Role: primary

Shari Robesky

Role: primary

Dianne Feltham

Role: primary

Cherise Detweiler

Role: primary

Monica Korba

Role: primary

Tiffany Moore

Role: primary

Cynthia Tyson

Role: primary

Beth Montgomery

Role: primary

Josie Zamora

Role: primary

Justine Waddell

Role: primary

Susan Abernethy

Role: primary

References

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Costigan HJ, VanDyke E, Calo WA, Tucci A, Van Scoy LJ; Project Talk Trial Collaborative Working Group Members. Adapting Advance Care Planning Interventions for Hispanic Communities Across the U.S. Am J Hosp Palliat Care. 2025 Dec;42(12):1290-1297. doi: 10.1177/10499091241306427. Epub 2024 Dec 19.

Reference Type DERIVED
PMID: 39700514 (View on PubMed)

Van Scoy LJ, Levi BH, Bramble C, Calo W, Chinchilli VM, Currin L, Grant D, Hollenbeak C, Katsaros M, Marlin S, Scott AM, Tucci A, VanDyke E, Wasserman E, Witt P, Green MJ. Comparing two advance care planning conversation activities to motivate advance directive completion in underserved communities across the USA: The Project Talk Trial study protocol for a cluster, randomized controlled trial. Trials. 2022 Sep 30;23(1):829. doi: 10.1186/s13063-022-06746-3.

Reference Type DERIVED
PMID: 36180899 (View on PubMed)

Provided Documents

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Document Type: Informed Consent Form: Project Talk Trial-ICF-Hello-10122020

View Document

Document Type: Informed Consent Form: Project Talk Trial-ICF-Hosts-10122020

View Document

Document Type: Informed Consent Form: Project Talk Trial-ICF-CPKit-10102020

View Document

Document Type: Informed Consent Form: Project Talk Trial-ICF-Control-10122020

View Document

Other Identifiers

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STUDY00014689

Identifier Type: -

Identifier Source: org_study_id