Development of a Community Engagement Activity for Advance Care Planning

Chronic Disease Clinical Trial

— CERC  

Official title:

Development of a Community Engagement Activity for Advance Care Planning

Clinical Trial Details — Status: Completed

Administrative data

• NCT number: NCT02575417
• Other study ID #: 00003004
• Status: Completed
• Phase: N/A
• Start date: August 2015
• Est. completion date: November 2016

Study information

• Verified date: October 2020
• Source: Milton S. Hershey Medical Center
• Contact: n/a
• Is FDA regulated: No
• Study type: Interventional

Clinical Trial 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.

Description:

While many patients and caregivers of individuals with chronic illness recognize the importance of advance care planning, many feel uncomfortable initiating end-of-life conversations with loved ones. Few tools exist that effectively engage caregivers and address their particular concerns and needs. The investigators have preliminary data showing that an easily implementable intervention (a conversation game) effectively engages healthy participants in realistic and satisfying ACP conversations. However, the investigators have not yet tested the acceptability or feasibility of using the game in a population of caregivers and/or patients with chronic illness. This pilot project will enable us to engage community-based patients and caregivers to determine if they find the game a satisfying, acceptable, relevant, and effective tool for advance care planning.

Recruitment information / eligibility

• Status: Completed
• Enrollment: 93
• Est. completion date: November 2016
• Est. primary completion date: August 2016
• Accepts healthy volunteers: Accepts Healthy Volunteers
• Gender: All
• Age group: 18 Years and older

Eligibility

Inclusion Criteria:

Participants are eligible to participate if they fall into at least one of the following three groups:

1. CAREGIVER criteria include:

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

2. PATIENT criteria include:

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-defined using Iezonnis' ICD-9 criteria67)

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

3. SURROGATE DECISION MAKERS FOR PATIENTS WITH CHRONIC ILLNESS criteria include:

1. considers themselves a surrogate decision maker for an adult with a chronic illness (defined above)

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

Exclusion Criteria:

1. Do not fall into any of the three categories above

2. Have a diagnosis of dementia (by self-report or chart review)

3. Fall into the Surrogate Decision Maker category but the patient cannot also participate in the same study session

Related Conditions & MeSH terms

• Chronic Disease

Intervention

Behavioral:
• Conversation Game
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

Locations

Country	Name	City	State
United States	Penn State Hershey College of Medicine	Hershey	Pennsylvania

Sponsors (1)

Lead Sponsor	Collaborator
Milton S. Hershey Medical Center

Country where clinical trial is conducted

United States, 

References & 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. — View Citation

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	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	Experiences and perceptions of intervention	Focus-group, open-ended qualitative questions	10 minutes after intervention ends