Patient Perception of Video Advance Care Planning
| Status: | Recruiting |
|---|---|
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 11/22/2018 |
| Start Date: | February 2016 |
| End Date: | November 2019 |
| Contact: | Erin S DeMartino, MD |
| Email: | DeMartino.Erin@mayo.edu |
| Phone: | 507-284-3811 |
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.
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.
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.
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.
Inclusion Criteria:
- Patients undergoing dialysis treatment
- 18 years of age or older
Exclusion Criteria:
We found this trial at
1
site
Rochester, Minnesota 55905
Principal Investigator: Paul Mueller, MD
Phone: 507-284-3811
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