This national project will provide an effective, evidence-based intervention for advance care
      planning (ACP) to 50 underserved US communities, those with poor access to healthcare systems
      due to economic, cultural or other barriers. The project will also examine 15 of the 50
      communities to learn about the unique needs of African American communities in regards to ACP
      and to assess the intervention with this population. The team includes the Hospice Foundation
      of America and a university-based research team from Penn State Milton S. Hershey Medical
      Center.

Using an End-of-life Conversation Game to Engage Underserved Communities in Advance Care Planning

Advance Care Planning

Vulnerable Populations

Advance Directives

Terminal Illness

The project goal explores how best to meet the needs of underserved communities to improve
      engagement in the advance care planning (ACP) process, which is defined as a complex and
      ongoing process that involves discussions with loved ones and/or clinicians, and/or may
      involve completion of an advance directive document. This national project involves two
      components: 1) a community outreach program, Community Game Days; and 2) a research project.
      The community outreach component seeks to provide an effective, evidence based ACP
      intervention to 50 underserved communities (defined as those with poor access to healthcare
      systems due to economic, cultural or linguistic barriers). Of these, 15 African American
      communities across the United States will be selected for participation in the research
      aspect of the project which seeks to assess the program's impact on and to learn about the
      unique needs of African American populations with regard to ACP. A highly integrated,
      collaborative approach will be used, bringing together a national organization concerned
      about end-of-life care (the Hospice Foundation of America (HFA) and a university-based
      academic research team (led by Dr. Lauren Van Scoy at Penn State Milton S. Hershey Medical
      Center through her research program, Project Talk).

      The project teams will organize and support a 14-month long community outreach project that
      will bring an end-of-life conversation game, "Hello," to 50 communities across the United
      States. The game has been found to stimulate substantive, enjoyable and meaningful
      end-of-life discussions among participants. Further, over 70% of participants who played the
      game went on to perform additional ACP behaviors.2-4 That body of research is limited,
      however, by a primarily Caucasian or South Asian Indian demographic. It is well established
      that African Americans have historically low rates of ACP completion when compared to
      Caucasians and that they often receive overly aggressive and unwanted care at the
      end-of-life.5,6 Thus, learning how best to engage the African American population in ACP
      activities is critical. Thus, this research project aims to determine whether and to what
      extent this priming activity yields similar results in African American communities. The
      research team will conduct mixed methods research on the impact of the game on the
      performance of subsequent ACP behavior as well as explore the broad needs of African American
      communities with regards to ACP.

      Fifteen of the 50 qualified locations who can demonstrate through a screening process the
      ability to attract a majority African American audience will be selected to participate in
      the research aspect of the project which will involve: 1) pre-game questionnaires to assess
      population characteristics and readiness to engage in ACP, 2) post- game questionnaires to
      assess satisfaction, realism about the conversation game and readiness to engage in ACP, 3)
      post-game focus groups to further explore opinions about the game, the value of priming
      activities, and the broad needs of the community for encouraging ACP, and 4) 3 month
      follow-up phone interviews to assess ACP behaviors that have been performed and perceived
      impact of the priming activity. Participants from the additional 35 sites can opt-in to
      participate in a 3 months follow-up phone call. As the trial progressed, the time-frame for
      follow-up phone interviews was extended to 3 - 9 months.

      Upon completion of this project, this collaboration is expected to have reached up to 1000
      African American individuals and 1,500 other underserved individuals and provided them with
      an enjoyable and rich experience that facilitates communication about end-of-life issues. The
      research data is expected to provide a significant contribution to the field by yielding
      information about the needs of 15 African American communities as well as to yield data
      related to the impact of the priming activity (the game) on ACP behaviors in this
      traditionally underserved group.

End-of-life conversation game called "Hello"

This phone questionnaire assesses whether participants went on to perform various behaviors related to advance care planning.

Associate Professor of Medicine, Humanities and Public Health Sciences

This validated questionnaire measure assesses engagement in various ACP behaviors and/or readiness to perform ACP behaviors. Items are scored on a 5 point Likert scale (1-5, with 5 indicating highest readiness to perform ACP). Items are averaged for a final score ranging 1-5.

Measures participants' satisfaction with the conversation. There are 5 items in the measure, each item is scored on a 1-7 scale with 1 being lowest conversation satisfaction. The items are averaged for the final score ranging 1-7 with 7 indicating the highest conversation satisfaction.

Measure participants' attitudes about ACP. This a 8-item questionnaire. Scores are calculated by summative responses and the total score ranges from 7-49 with 7 being the least amount of skepticism (a better outcome).

The Conversation Realism survey is an 8-item questionnaire that measures how realistic players felt the game conversation was. Each question is measured with a 7- point Likert scale, with "1" being the least realistic and "7" being the most realistic (better outcome) conversation.

The Net Promoter Score is a widely single-question (How likely are you to recommend Hello to friends and family?) used to measure participants' game experience on a 10-point scale. It is measured in two ways: (1) raw score is measured on a 10-point scale with 0 being "not likely at all" to 10 (better outcome) being "extremely likely" (2) calculated score = 10-point scale is broken down as follows: detractor score (0-6); passive score (7-8); promoter score (9-10). Passive scores are ignored. The calculated score is: (total number of promoters) - (total number of detractors) / (total number of responses) = score ranging from - 100 to +100 with +100 being the best (better outcome).

Group discussions held to collect feedback and opinions about playing the conversation game. Data collected is qualitative.

Qualitative focus groups will explore the needs of diverse African American populations with regards to ACP and end-of-life planning

All participants will engage in playing the end-of-life conversation game called "Hello", which involves answering open-ended questions about medical decision making and end-of-life issues.

Using an End-of-life Conversation Game to Engage Underserved Communities in Advance Care Planning

About this trial

Study ID

Status

Type

Phase

Placebo

Accepting

Trial Timing

What is this trial about?

What are the participation requirements?