Advance Care Planning, Advance Directives, Chronic Illness, Communication, Terminal Illness
Conditions
Keywords
serious games
Brief summary
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
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.
Interventions
BEHAVIORALHello (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.
BEHAVIORALThe 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.
OTHERTable 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?').
Sponsors
Milton S. Hershey Medical Center
Hospice Foundation of America
University of Kentucky
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
OTHER
Masking
SINGLE (Investigator)
Masking description
The principal investigator and statistical teams will be blinded to the allocation of study participants to the study arms.
Intervention model description
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.
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
Community Hosts 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
Community Hosts 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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Completion of a Self-reported or Visually Verified Advance Directive | 6 months post-intervention | Study team confirms completion of a signed advance directive collected via self-report or visual verification |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Completion of at least one Other Advance Care Planning (ACP) behavior | 6 months post-intervention | Performance of at least one other ACP behaviors, since the event, such as self-reported ACP completion, discussions with loved ones, conversations with care providers, financial preparations (long-term health insurance, life insurance, disability insurance, etc.), nursing home/long-term care planning, hospice or palliative care planning, funeral arrangements, etc. |
| Change in Advance Care Planning(ACP) Engagement Readiness 4-Item Survey | Baseline (Day of event participation); 6 months post-event participation | This short-version survey measures stages of readiness to perform ACP. |
Countries
United States
Contacts
PRINCIPAL_INVESTIGATORLauren J. Van Scoy, MD
Penn State Milton S. Hershey Medical Center; Penn State University College of Medicine
Outcome results
None listed