Development of a Community Engagement Activity for Advance Care Planning

NCT02575417 | Completed DMC

• 1 other identifier: 00003004
• Study Type: interventional
• Target: 93
• Locations: 1 country
• Sites: 1

Brief Summary

This study will determine the feasibility of using an end-of-life conversation game (called "My Gift of Grace") as a community engagement activity series to help caregivers, patients with chronic illness, and/or their families perform advance care planning.

Conditions

Chronic Disease

Keywords

advance care planning; end-of-life care; health games; Family caregivers; Advance directives

Outcome Measures

Primary Outcomes (1)

• Change in self-efficacy and readiness to perform advance care planning behaviors

  55-item survey, likert scale ratings

  Baseline (before study session) and 12 weeks post-study

Secondary Outcomes (1)

• Experiences and perceptions of intervention

  10 minutes after intervention ends

Study Arms (3)

Patient Only

EXPERIMENTAL

Individuals who meet the following criteria will play "My Gift of Grace," a conversation game. Eligibility Criteria for Patient Only Groups: 1. are 18 years or older 2. speak and read English 3. have at least one chronic illness (cancer, chronic pulmonary disease, coronary artery disease, congestive heart failure, peripheral vascular disease, severe chronic liver disease, diabetes with end organ damage, renal failure) 4. have not completed an advance directive within the past 18 months 5. are able to sit for about 2.5-3 hours 6. are able to focus on the game for about 1.5-2 hours 7. can complete required surveys

Behavioral: Conversation Game

Caregiver Only

EXPERIMENTAL

Individuals who meet the following criteria will play "My Gift of Grace," a conversation game. Eligibility Criteria for Caregiver Only Groups: 1. are 18 years or older 2. speak and read English 3. have been an unpaid caregiver for an adult over the age of 18 in the last 12 months. Being an unpaid caregiver may include helping with personal needs or household chores, managing a person's finances, arranging for outside services, or visiting regularly to see how they are doing. This person need not live with participants in order for them to identify as caregivers; 4. are able to sit for about 2.5-3 hours 5. are able to focus on the game for about 1.5-2 hours 6. can complete required survey 7. care recipient is capable of discussing medical issues 8. care recipient has not completed an AD in past 18 months

Behavioral: Conversation Game

Surrogate Decision Maker with Patient

EXPERIMENTAL

Individuals who meet the following criteria will play "My Gift of Grace," a conversation game. Eligibility Criteria for Surrogate Decision Maker and Patient Group: 1. considers themselves a surrogate decision maker for an adult with a chronic illness (defined in "Patient Only" Group) 2. are 18 years or older 3. speak and read English 4. are able to sit for about 2.5-3 hours 5. are able to focus on the game for about 1.5-2 hours 6. can complete required surveys 7. both patient and surrogate decision maker are able to attend study session together 8. patient must meet eligibility criteria defined in "Patient Only" group

Behavioral: Conversation Game

Interventions

Conversation Game BEHAVIORAL

The game consists of 47 question cards that prompt players to identify and articulate their values and beliefs related to dying and end-of-life issues; 20 questions have been selected for this study

Caregiver Only; Patient Only; Surrogate Decision Maker with Patient

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• Participants are eligible to participate if they fall into at least one of the following three groups:
• CAREGIVER criteria include:
• are 18 years or older
• speak and read English
• have been an unpaid caregiver for an adult over the age of 18 in the last 12 months. Being an unpaid caregiver may include helping with personal needs or household chores, managing a person's finances, arranging for outside services, or visiting regularly to see how they are doing. This person need not live with participants in order for them to identify as caregivers;
• are able to sit for about 2.5-3 hours
• are able to focus on the game for about 1.5-2 hours
• can complete required survey
• care recipient is capable of discussing medical issues
• care recipient has not completed an AD in past 18 months
• PATIENT criteria include:
• are 18 years or older
• speak and read English
• have at least one chronic illness (cancer, chronic pulmonary disease, coronary artery disease, congestive heart failure, peripheral vascular disease, severe chronic liver disease, diabetes with end organ damage, renal failure-defined using Iezonnis' ICD-9 criteria67)
• have not completed an advance directive within the past 18 months

You may not qualify if:

• Do not fall into any of the three categories above
• Have a diagnosis of dementia (by self-report or chart review)
• Fall into the Surrogate Decision Maker category but the patient cannot also participate in the same study session

Sponsors & Collaborators

• Milton S. Hershey Medical Center: lead

Study Sites (1)

Penn State Hershey College of Medicine

Hershey, Pennsylvania, 17011, United States

Location

Related Publications (1)

• Van Scoy LJ, Reading JM, Hopkins M, Smith B, Dillon J, Green MJ, Levi BH. Community Game Day: Using an End-of-Life Conversation Game to Encourage Advance Care Planning. J Pain Symptom Manage. 2017 Nov;54(5):680-691. doi: 10.1016/j.jpainsymman.2017.07.034. Epub 2017 Jul 23.

  PMID: 28743662 RESULT

MeSH Terms

Conditions

Chronic Disease

Condition Hierarchy (Ancestors)

Disease Attributes; Pathologic Processes; Pathological Conditions, Signs and Symptoms

Study Officials

• Lauren Van Scoy, MD

  Penn State Hershey College of Medicine

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NON RANDOMIZED
• Masking: NONE
• Purpose: SUPPORTIVE CARE
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Assistant Professor

Study Record Dates

• First Submitted: October 12, 2015
• First Posted: October 14, 2015
• Study Start: August 1, 2015
• Primary Completion: August 1, 2016
• Study Completion: November 1, 2016
• Last Updated: October 14, 2020

Record last verified: 2020-10

Locations

US (1)