Patient Perception of Video Advance Care Planning

Perceptions of Advance Directive Formats-A Pilot Study

Rates of advance directive completion among Americans, even those suffering from serious chronic illness, are notoriously poor. Moreover, the contents of completed advance directives are often difficult to interpret in the face of a medical crisis. The study aims to examine patient perceptions of electronic, interactive versions of advance care planning documentation.

Study Overview

• Status: Completed
• Conditions: Advanced Directive Planning
• Intervention / Treatment: Other: Honor My Decisions Advance Care Planning Video; Behavioral: Post-video questionnaire

Detailed Description

The investigators are studying the video platform of a commercially available advance directive application, Honor My Decisions. This application was generated with funding from patient advocacy groups. The application allows a person to create a legally valid advance directive on his or her own tablet or smart phone and share that directive (either by printing or emailing a secure link to family and/or health care providers). Additionally, the app includes a feature by which individuals may record several 2-4 minute videos to memorialize their health preferences, and also to leave a more personal message for loved ones (a video legacy).

The research team has compiled a list of question prompts for these advance care planning videos with the assistance of a panel of experts on communication, palliative care, critical care, ethics and the law. The investigators collected prompt suggestions from these 9 experts with a modified Delphi technique, using iterative surveys to generate consensus. The experts were instructed to consider both contents and phrasing of question prompts, to promote usability and also later utility (if the patient later became unable to speak for him- or herself). These question prompts will form the basis of this pilot study.

The investigators aim to assess the experiences of patients completing electronic advance directives and documenting their care preferences and personal legacy via video. Renal dialysis patients have been selected as a patient population with frequent hospitalizations and low rates of advance directive completion. Patients will be given the opportunity to interact with the application and record their own videos. They will then provide immediate and long-term feedback about the video question prompts via interview.

• Study Type: Interventional
• Enrollment (Actual): 36
• Phase: Not Applicable

Contacts and Locations

Study Locations

• United States
  • Minnesota
    • Rochester, Minnesota, United States, 55905
      • Mayo Clinic

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

Description

Inclusion Criteria:

• Patients undergoing dialysis treatment
• 18 years of age or older

Exclusion Criteria:

-

Study Plan

How is the study designed?

Design Details

• Primary Purpose: Health Services Research
• Allocation: N/A
• Interventional Model: Single Group Assignment
• Masking: None (Open Label)

Number of Arms

1

Arms and Interventions

Participant Group / Arm	Intervention / Treatment
Other: Dialysis Patients; Honor My Decisions Advance Care Planning Videos, self-recorded by a patient using a computer application, followed immediately by a post-video questionnaire and a follow-up questionnaire 2-4 weeks later.	Other: Honor My Decisions Advance Care Planning Video; Honor My Decisions is a commercial computer application which allows a person to record a video of his/her advanced care planning and legacy information.; Behavioral: Post-video questionnaire; Questions regarding the video process, changes to previous answers and reaction received by others viewing the video

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Time Frame
Number of advanced care planning videos completed	Approximately 2-4 weeks after consenting

Secondary Outcome Measures

Outcome Measure	Time Frame
Number of completed post-video questionnaires	Approximately 2-4 weeks after recording video

Collaborators and Investigators

• Sponsor: Mayo Clinic
• Investigators: Principal Investigator: Paul Mueller, MD, Mayo Clinic

Publications and helpful links

Helpful Links

• Mayo Clinic Clinical Trials

Study record dates

Study Major Dates

• Study Start: February 1, 2016
• Primary Completion (Actual): June 5, 2016
• Study Completion (Actual): June 5, 2016

Study Registration Dates

• First Submitted: February 23, 2016
• First Submitted That Met QC Criteria: February 25, 2016
• First Posted (Estimate): February 26, 2016

Study Record Updates

• Last Update Posted (Actual): February 21, 2022
• Last Update Submitted That Met QC Criteria: February 8, 2022
• Last Verified: February 1, 2022

More Information

Terms related to this study

• Other Study ID Numbers: 15-008704

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO