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This study will compare a web-based advance directive to a standard advance directive.
Patients with GI and thoracic malignancies will be randomized to either a standard paper advance directive or the web advance directive (Ourcarewishes.org). Patients will be approached in the Cancer Center and provided the AD information to complete on their own. They will complete a survey at enrollment and a follow up survey administered by email. The primary endpoint will be proportion with new documentation in the EHR at 8 weeks. Second endpoints will include the change in satisfaction with end-of-life plans, AD acceptability, self-reported rates of completion, self-reported rate of sharing with their preferred surrogate decision-maker, proportion with new documentation of preferred decision-maker in the chart, and qualitative feedback. Patients in both groups will receive follow up reminder emails encouraging them to complete the advance directive.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Web-based AD | Experimental | Patients will be encouraged to use the web platform for advance care planning/advance directive to document their care preferences.. |
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| Paper AD | Active Comparator | Patients will be given the standard advance directive and encouraged to complete on their own. |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Web platform for advance care planning/advance directive | Other | Ourcarewishes (OCW) is a web-based platform to document advance care planning based at Penn. OCW contains more detailed content on preferences and values than a standard advance directive and allows electronic sharing with loved ones and transmission to the Penn EHR. |
| Measure | Description | Time Frame |
|---|---|---|
| New documentation of advance care planning in the EHR | any new advance directive or advance care planning note, excluding an advance directive that either 1) contains only information on the patient's preferred surrogate decision-makers, or 2) is blank except for personal identifying information. | 8 weeks |
| Measure | Description | Time Frame |
|---|---|---|
| Change in satisfaction with end-of-life plans | Change in mean score on the satisfaction with end-of-life scale, adapted from doi: 10.1377/hlthaff.2012.0895, Canadian Healthcare Evaluation Project (CANHELP) questionnaire. This scale measures satisfaction with end-of-life planning on a 12-60 point scale (if all questions answered, 0 possible if "don't know/refusal" chosen for all 12 questions. Higher scores are considered better. |
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Inclusion Criteria (any of the following)
Exclusion criteria:
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Ruth & Raymond Perelman Center for Advanced Medicine | Philadelphia | Pennsylvania | 19104 | United States |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 23381535 | Background | Halpern SD, Loewenstein G, Volpp KG, Cooney E, Vranas K, Quill CM, McKenzie MS, Harhay MO, Gabler NB, Silva T, Arnold R, Angus DC, Bryce C. Default options in advance directives influence how patients set goals for end-of-life care. Health Aff (Millwood). 2013 Feb;32(2):408-17. doi: 10.1377/hlthaff.2012.0895. | |
| 17942272 | Background |
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| ID | Term |
|---|---|
| D005770 | Gastrointestinal Neoplasms |
| ID | Term |
|---|---|
| D004067 | Digestive System Neoplasms |
| D009371 | Neoplasms by Site |
| D009369 | Neoplasms |
| D004066 | Digestive System Diseases |
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| ID | Term |
|---|---|
| D032722 | Advance Care Planning |
| D016223 | Advance Directives |
| ID | Term |
|---|---|
| D010347 | Patient Care Planning |
| D003191 | Comprehensive Health Care |
| D010346 | Patient Care Management |
| D006298 | Health Services Administration |
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Patients will be blinded to the comparison being made, but not to the intervention in their arm.
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|
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| Standard advance directive | Other | Patients receive a paper copy of an advance directive used by social workers at Penn Medicine and are encouraged to complete on their own. |
|
| Initial completed at enrollment, survey sent again at 15 days |
| Acceptability | Mean score on an acceptability scale adapted from DOI: 10.1016/j.pec.2007.08.015. This is a scale that measures advance directive acceptability on a 5-50 point scale. Higher scores represent better outcomes. | Survey sent at 15 days (reminders at 2 week intervals x 2, then phone call) |
| Self reporting sharing with surrogate | Proportion reporting sharing with preferred surrogate | Survey sent at 15 days (reminders 4, 6)Survey sent at 15 days (reminders at 2 week intervals x 2, then phone call) |
| Self reporting completion | Proportion reporting completing some or all of the advance directive | Survey sent at 15 days (reminders at 2 week intervals x 2, then phone call) |
| Qualitative feedback | Comments on what patients liked, did not like, and would change about the advance directive | Survey sent at 15 days (reminders at 2 week intervals x 2, then phone call) |
| Surrogate preferences | Proportion of subjects with new information about their preferred surrogate decision-maker in the chart | 8 weeks |
| Sudore RL, Landefeld CS, Barnes DE, Lindquist K, Williams BA, Brody R, Schillinger D. An advance directive redesigned to meet the literacy level of most adults: a randomized trial. Patient Educ Couns. 2007 Dec;69(1-3):165-95. doi: 10.1016/j.pec.2007.08.015. Epub 2007 Oct 17. |
| D005767 |
| Gastrointestinal Diseases |
| D007603 | Jurisprudence |
| D012926 | Social Control, Formal |
| D004472 | Health Care Economics and Organizations |