Comparison of a Web-based Advance Directive to a Standard Advance Directive

University of Pennsylvania90 enrolled

Overview

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.

Study Type

INTERVENTIONAL

Allocation

RANDOMIZED

Purpose

HEALTH_SERVICES_RESEARCH

Masking

NONE

Enrollment

Conditions

GI Cancer Thoracic Cancer

Interventions

Web platform for advance care planning/advance directiveOTHER

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.

Standard advance directiveOTHER

Patients receive a paper copy of an advance directive used by social workers at Penn Medicine and are encouraged to complete on their own.

Eligibility

Sex: ALL

Medical Language ↔ Plain English

Inclusion Criteria (any of the following) * Pancreatic cancer, any stage except stage 0 (C25), * NSCLC, stage IIIA or higher (C34), * SCLC, any stage (C34), * Colon cancer, stage IIIB or greater (C18), * Rectal cancer, stage IIB or greater (C21), * Esophageal cancer (adeno or squamous), any stage (C15), * Stomach cancer, stage IIB or greater (C16), * Gallbladder cancer, stage I or greater (C23), * Cholangiocarcinoma, any stage (C22.1), * HCC, any stage (no plan for transplant) (C22.0), * Malignant carcinoid of GI tract, stage IV (C7A.019). Exclusion criteria: * Does not have an active patient portal (MyPennMedicine) account, * Does not use email at least once per month, * Has already completed a living will, * Does not speak fluent English, * Unwilling to be contacted by email, * Determined to be too ill or inappropriate for participation by patient's oncologist.

Locations (1)

Ruth & Raymond Perelman Center for Advanced Medicine

Philadelphia, Pennsylvania, United States

Outcomes

Primary Outcomes

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.

Time frame: 8 weeks

Secondary Outcomes

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.

Time frame: 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.

Time frame: 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

Time frame: 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

Time frame: 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

Data from ClinicalTrials.gov

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