Trial Outcomes & Findings for Patient-centered and Efficacious Advance Care Planning in Cancer: the PEACe Comparative Effectiveness Trial (NCT NCT03824158)

NCT ID: NCT03824158

Last Updated: 2026-01-14

Results Overview

15-item Advance Care Planning (ACP) engagement survey assesses ACP processes related to choosing a medical decision maker, discussing and documenting preference for care at end of life, flexibility for surrogate decision making, and asking questions of medical providers. A single summary score will be reported (range 0-5 with higher scores indicating higher engagement).

Recruitment status

COMPLETED

Study phase

NA

Target enrollment

672 participants

Primary outcome timeframe

12 weeks

Results posted on

2026-01-14

Participant Flow

Recruitment occurred from August 1, 2019 until July 14, 2023. Patients were enrolled from 8 oncology clinics within the University of Pittsburgh Medical Center Hillman Cancer Center Network in western Pennsylvania. Patients were encouraged but not required to identify a caregiver, defined as the primary adult (family member or friend) involved in their care and best able to participate in the study, as assessed by the patient. Patients without a willing caregiver participant were not excluded.

Participant milestones

Participant milestones
Measure
Web-based Advance Care Planning (PATIENTS)
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Web-based Advance Care Planning (CAREGIVERS)
Enrolled caregivers of patients randomized to the web-based advance care planning arm.
Facilitated Advance Care Planning (In-person or Telephonic) (CAREGIVERS)
Enrolled caregivers of patients randomized to the facilitated advance care planning arm.
Overall Study
STARTED
203
197
133
139
Overall Study
COMPLETED
134
135
102
108
Overall Study
NOT COMPLETED
69
62
31
31

Reasons for withdrawal

Withdrawal data not reported

Baseline Characteristics

Current living situation was only collected for enrolled patients. Caregivers were not included in this measure.

Baseline characteristics by cohort

Baseline characteristics by cohort
Measure
Web-based Advance Care Planning (PATIENTS)
n=203 Participants
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
n=197 Participants
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Web-based Advance Care Planning (CAREGIVERS)
n=133 Participants
Enrolled caregivers of patients randomized to the web-based advance care planning arm.
Facilitated Advance Care Planning (In-person or Telephonic) (CAREGIVERS)
n=139 Participants
Enrolled caregivers of patients randomized to the facilitated advance care planning arm.
Total
n=672 Participants
Total of all reporting groups
Race (NIH/OMB)
Native Hawaiian or Other Pacific Islander
0 Participants
n=203 Participants
0 Participants
n=197 Participants
0 Participants
n=133 Participants
0 Participants
n=139 Participants
0 Participants
n=672 Participants
Age, Continuous
67.8 years
STANDARD_DEVIATION 10 • n=203 Participants
68.1 years
STANDARD_DEVIATION 11 • n=197 Participants
62.2 years
STANDARD_DEVIATION 13.6 • n=133 Participants
61.9 years
STANDARD_DEVIATION 13.5 • n=139 Participants
67.9 years
STANDARD_DEVIATION 10.5 • n=672 Participants
Sex: Female, Male
Female
96 Participants
n=203 Participants
96 Participants
n=197 Participants
96 Participants
n=133 Participants
103 Participants
n=139 Participants
391 Participants
n=672 Participants
Sex: Female, Male
Male
107 Participants
n=203 Participants
101 Participants
n=197 Participants
37 Participants
n=133 Participants
36 Participants
n=139 Participants
281 Participants
n=672 Participants
Ethnicity (NIH/OMB)
Hispanic or Latino
1 Participants
n=203 Participants
3 Participants
n=197 Participants
1 Participants
n=133 Participants
1 Participants
n=139 Participants
6 Participants
n=672 Participants
Ethnicity (NIH/OMB)
Not Hispanic or Latino
201 Participants
n=203 Participants
194 Participants
n=197 Participants
132 Participants
n=133 Participants
136 Participants
n=139 Participants
663 Participants
n=672 Participants
Ethnicity (NIH/OMB)
Unknown or Not Reported
1 Participants
n=203 Participants
0 Participants
n=197 Participants
0 Participants
n=133 Participants
2 Participants
n=139 Participants
3 Participants
n=672 Participants
Race (NIH/OMB)
American Indian or Alaska Native
0 Participants
n=203 Participants
1 Participants
n=197 Participants
0 Participants
n=133 Participants
1 Participants
n=139 Participants
2 Participants
n=672 Participants
Race (NIH/OMB)
Asian
1 Participants
n=203 Participants
1 Participants
n=197 Participants
1 Participants
n=133 Participants
1 Participants
n=139 Participants
4 Participants
n=672 Participants
Race (NIH/OMB)
Black or African American
17 Participants
n=203 Participants
13 Participants
n=197 Participants
6 Participants
n=133 Participants
5 Participants
n=139 Participants
41 Participants
n=672 Participants
Race (NIH/OMB)
White
184 Participants
n=203 Participants
181 Participants
n=197 Participants
125 Participants
n=133 Participants
132 Participants
n=139 Participants
622 Participants
n=672 Participants
Race (NIH/OMB)
More than one race
1 Participants
n=203 Participants
1 Participants
n=197 Participants
1 Participants
n=133 Participants
0 Participants
n=139 Participants
3 Participants
n=672 Participants
Race (NIH/OMB)
Unknown or Not Reported
0 Participants
n=203 Participants
0 Participants
n=197 Participants
0 Participants
n=133 Participants
0 Participants
n=139 Participants
0 Participants
n=672 Participants
Region of Enrollment
United States
203 participants
n=203 Participants
197 participants
n=197 Participants
133 participants
n=133 Participants
139 participants
n=139 Participants
672 participants
n=672 Participants
Education Level
< High school
4 Participants
n=203 Participants
6 Participants
n=197 Participants
1 Participants
n=133 Participants
3 Participants
n=139 Participants
14 Participants
n=672 Participants
Education Level
High school diploma or GED
66 Participants
n=203 Participants
63 Participants
n=197 Participants
34 Participants
n=133 Participants
36 Participants
n=139 Participants
199 Participants
n=672 Participants
Education Level
Some college or college degree
107 Participants
n=203 Participants
99 Participants
n=197 Participants
74 Participants
n=133 Participants
69 Participants
n=139 Participants
349 Participants
n=672 Participants
Education Level
Graduate or professional degree
25 Participants
n=203 Participants
28 Participants
n=197 Participants
24 Participants
n=133 Participants
31 Participants
n=139 Participants
108 Participants
n=672 Participants
Education Level
Refused to answer
1 Participants
n=203 Participants
1 Participants
n=197 Participants
0 Participants
n=133 Participants
0 Participants
n=139 Participants
2 Participants
n=672 Participants
Current Marital Status
Never married
16 Participants
n=203 Participants
14 Participants
n=197 Participants
12 Participants
n=133 Participants
6 Participants
n=139 Participants
48 Participants
n=672 Participants
Current Marital Status
Married
125 Participants
n=203 Participants
118 Participants
n=197 Participants
105 Participants
n=133 Participants
113 Participants
n=139 Participants
461 Participants
n=672 Participants
Current Marital Status
Widowed
28 Participants
n=203 Participants
35 Participants
n=197 Participants
6 Participants
n=133 Participants
9 Participants
n=139 Participants
78 Participants
n=672 Participants
Current Marital Status
Divorced/Separated
28 Participants
n=203 Participants
28 Participants
n=197 Participants
8 Participants
n=133 Participants
10 Participants
n=139 Participants
74 Participants
n=672 Participants
Current Marital Status
Refused to answer
5 Participants
n=203 Participants
0 Participants
n=197 Participants
2 Participants
n=133 Participants
1 Participants
n=139 Participants
8 Participants
n=672 Participants
Current Marital Status
Unknown
1 Participants
n=203 Participants
2 Participants
n=197 Participants
0 Participants
n=133 Participants
0 Participants
n=139 Participants
3 Participants
n=672 Participants
Ability to manage on income
Cannot make ends meet
6 Participants
n=203 Participants
2 Participants
n=197 Participants
8 Participants
n=133 Participants
2 Participants
n=139 Participants
18 Participants
n=672 Participants
Ability to manage on income
Just manage to get by
51 Participants
n=203 Participants
46 Participants
n=197 Participants
21 Participants
n=133 Participants
24 Participants
n=139 Participants
142 Participants
n=672 Participants
Ability to manage on income
Have enough with a little extra
59 Participants
n=203 Participants
77 Participants
n=197 Participants
58 Participants
n=133 Participants
54 Participants
n=139 Participants
248 Participants
n=672 Participants
Ability to manage on income
Money is not a problem
56 Participants
n=203 Participants
48 Participants
n=197 Participants
35 Participants
n=133 Participants
41 Participants
n=139 Participants
180 Participants
n=672 Participants
Ability to manage on income
Refused to answer
27 Participants
n=203 Participants
24 Participants
n=197 Participants
11 Participants
n=133 Participants
18 Participants
n=139 Participants
80 Participants
n=672 Participants
Ability to manage on income
Unknown
4 Participants
n=203 Participants
0 Participants
n=197 Participants
0 Participants
n=133 Participants
0 Participants
n=139 Participants
4 Participants
n=672 Participants
Religion
Agnostic/Atheist/No religion
8 Participants
n=203 Participants
14 Participants
n=197 Participants
5 Participants
n=133 Participants
9 Participants
n=139 Participants
36 Participants
n=672 Participants
Religion
Buddhist
1 Participants
n=203 Participants
0 Participants
n=197 Participants
0 Participants
n=133 Participants
0 Participants
n=139 Participants
1 Participants
n=672 Participants
Religion
Catholic
91 Participants
n=203 Participants
72 Participants
n=197 Participants
57 Participants
n=133 Participants
56 Participants
n=139 Participants
276 Participants
n=672 Participants
Religion
Other Christian
24 Participants
n=203 Participants
27 Participants
n=197 Participants
12 Participants
n=133 Participants
19 Participants
n=139 Participants
82 Participants
n=672 Participants
Religion
Hindu
0 Participants
n=203 Participants
1 Participants
n=197 Participants
0 Participants
n=133 Participants
1 Participants
n=139 Participants
2 Participants
n=672 Participants
Religion
Jewish
3 Participants
n=203 Participants
5 Participants
n=197 Participants
3 Participants
n=133 Participants
4 Participants
n=139 Participants
15 Participants
n=672 Participants
Religion
Muslim
0 Participants
n=203 Participants
0 Participants
n=197 Participants
1 Participants
n=133 Participants
0 Participants
n=139 Participants
1 Participants
n=672 Participants
Religion
Protestant
42 Participants
n=203 Participants
48 Participants
n=197 Participants
33 Participants
n=133 Participants
28 Participants
n=139 Participants
151 Participants
n=672 Participants
Religion
Declined to answer
18 Participants
n=203 Participants
16 Participants
n=197 Participants
9 Participants
n=133 Participants
8 Participants
n=139 Participants
51 Participants
n=672 Participants
Religion
Other
15 Participants
n=203 Participants
14 Participants
n=197 Participants
13 Participants
n=133 Participants
14 Participants
n=139 Participants
56 Participants
n=672 Participants
Religion
Unknown
1 Participants
n=203 Participants
0 Participants
n=197 Participants
0 Participants
n=133 Participants
0 Participants
n=139 Participants
1 Participants
n=672 Participants
Religious importance
Not at all important
9 Participants
n=203 Participants
20 Participants
n=197 Participants
2 Participants
n=133 Participants
8 Participants
n=139 Participants
39 Participants
n=672 Participants
Religious importance
Not too important
24 Participants
n=203 Participants
25 Participants
n=197 Participants
17 Participants
n=133 Participants
21 Participants
n=139 Participants
87 Participants
n=672 Participants
Religious importance
Fairly important
53 Participants
n=203 Participants
43 Participants
n=197 Participants
39 Participants
n=133 Participants
43 Participants
n=139 Participants
178 Participants
n=672 Participants
Religious importance
Very important
106 Participants
n=203 Participants
101 Participants
n=197 Participants
68 Participants
n=133 Participants
64 Participants
n=139 Participants
339 Participants
n=672 Participants
Religious importance
Refused to answer
10 Participants
n=203 Participants
7 Participants
n=197 Participants
7 Participants
n=133 Participants
3 Participants
n=139 Participants
27 Participants
n=672 Participants
Religious importance
Unknown
1 Participants
n=203 Participants
1 Participants
n=197 Participants
0 Participants
n=133 Participants
0 Participants
n=139 Participants
2 Participants
n=672 Participants
Confidence filling out medical forms
Not at all
6 Participants
n=203 Participants
7 Participants
n=197 Participants
1 Participants
n=133 Participants
3 Participants
n=139 Participants
17 Participants
n=672 Participants
Confidence filling out medical forms
A little bit
9 Participants
n=203 Participants
9 Participants
n=197 Participants
4 Participants
n=133 Participants
3 Participants
n=139 Participants
25 Participants
n=672 Participants
Confidence filling out medical forms
Somewhat
54 Participants
n=203 Participants
43 Participants
n=197 Participants
16 Participants
n=133 Participants
15 Participants
n=139 Participants
128 Participants
n=672 Participants
Confidence filling out medical forms
Quite a bit
40 Participants
n=203 Participants
47 Participants
n=197 Participants
31 Participants
n=133 Participants
33 Participants
n=139 Participants
151 Participants
n=672 Participants
Confidence filling out medical forms
Extremely
94 Participants
n=203 Participants
91 Participants
n=197 Participants
81 Participants
n=133 Participants
85 Participants
n=139 Participants
351 Participants
n=672 Participants
How many other people live in your household?
0
45 Participants
n=203 Participants
49 Participants
n=197 Participants
7 Participants
n=133 Participants
10 Participants
n=139 Participants
111 Participants
n=672 Participants
How many other people live in your household?
1
112 Participants
n=203 Participants
110 Participants
n=197 Participants
90 Participants
n=133 Participants
95 Participants
n=139 Participants
407 Participants
n=672 Participants
How many other people live in your household?
2
26 Participants
n=203 Participants
24 Participants
n=197 Participants
17 Participants
n=133 Participants
17 Participants
n=139 Participants
84 Participants
n=672 Participants
How many other people live in your household?
3
14 Participants
n=203 Participants
12 Participants
n=197 Participants
14 Participants
n=133 Participants
14 Participants
n=139 Participants
54 Participants
n=672 Participants
How many other people live in your household?
4+
4 Participants
n=203 Participants
1 Participants
n=197 Participants
5 Participants
n=133 Participants
3 Participants
n=139 Participants
13 Participants
n=672 Participants
How many other people live in your household?
Unknown
2 Participants
n=203 Participants
1 Participants
n=197 Participants
0 Participants
n=133 Participants
0 Participants
n=139 Participants
3 Participants
n=672 Participants
Current employment status
Working full-time
20 Participants
n=203 Participants
21 Participants
n=197 Participants
40 Participants
n=133 Participants
46 Participants
n=139 Participants
127 Participants
n=672 Participants
Current employment status
Working part-time
7 Participants
n=203 Participants
7 Participants
n=197 Participants
11 Participants
n=133 Participants
12 Participants
n=139 Participants
37 Participants
n=672 Participants
Current employment status
Unemployed
11 Participants
n=203 Participants
9 Participants
n=197 Participants
3 Participants
n=133 Participants
2 Participants
n=139 Participants
25 Participants
n=672 Participants
Current employment status
Retired
118 Participants
n=203 Participants
120 Participants
n=197 Participants
59 Participants
n=133 Participants
62 Participants
n=139 Participants
359 Participants
n=672 Participants
Current employment status
Homemaker (never worked for pay)
1 Participants
n=203 Participants
4 Participants
n=197 Participants
5 Participants
n=133 Participants
3 Participants
n=139 Participants
13 Participants
n=672 Participants
Current employment status
Disability
24 Participants
n=203 Participants
22 Participants
n=197 Participants
4 Participants
n=133 Participants
6 Participants
n=139 Participants
56 Participants
n=672 Participants
Current employment status
Other
16 Participants
n=203 Participants
11 Participants
n=197 Participants
10 Participants
n=133 Participants
7 Participants
n=139 Participants
44 Participants
n=672 Participants
Current employment status
Refused to answer
6 Participants
n=203 Participants
3 Participants
n=197 Participants
1 Participants
n=133 Participants
1 Participants
n=139 Participants
11 Participants
n=672 Participants
HADS Survey Depression Subscale Scores
4.62 score on a scale
STANDARD_DEVIATION 3.44 • n=203 Participants
4.69 score on a scale
STANDARD_DEVIATION 3.52 • n=197 Participants
4.22 score on a scale
STANDARD_DEVIATION 3.54 • n=133 Participants
3.96 score on a scale
STANDARD_DEVIATION 3.43 • n=139 Participants
4.65 score on a scale
STANDARD_DEVIATION 3.48 • n=672 Participants
HADS Survey Anxiety Subscale Scores
5.22 score on a scale
STANDARD_DEVIATION 3.69 • n=203 Participants
5.15 score on a scale
STANDARD_DEVIATION 3.73 • n=197 Participants
7.0 score on a scale
STANDARD_DEVIATION 4.1 • n=133 Participants
7.44 score on a scale
STANDARD_DEVIATION 4.43 • n=139 Participants
5.19 score on a scale
STANDARD_DEVIATION 3.71 • n=672 Participants
Current living situation
In a home I (or my family) own
161 Participants
n=203 Participants • Current living situation was only collected for enrolled patients. Caregivers were not included in this measure.
155 Participants
n=197 Participants • Current living situation was only collected for enrolled patients. Caregivers were not included in this measure.
316 Participants
n=400 Participants • Current living situation was only collected for enrolled patients. Caregivers were not included in this measure.
Current living situation
In a home I (or my family) rent
31 Participants
n=203 Participants • Current living situation was only collected for enrolled patients. Caregivers were not included in this measure.
28 Participants
n=197 Participants • Current living situation was only collected for enrolled patients. Caregivers were not included in this measure.
59 Participants
n=400 Participants • Current living situation was only collected for enrolled patients. Caregivers were not included in this measure.
Current living situation
In a Board and Care home
0 Participants
n=203 Participants • Current living situation was only collected for enrolled patients. Caregivers were not included in this measure.
0 Participants
n=197 Participants • Current living situation was only collected for enrolled patients. Caregivers were not included in this measure.
0 Participants
n=400 Participants • Current living situation was only collected for enrolled patients. Caregivers were not included in this measure.
Current living situation
In an Assisted Living Facility
2 Participants
n=203 Participants • Current living situation was only collected for enrolled patients. Caregivers were not included in this measure.
3 Participants
n=197 Participants • Current living situation was only collected for enrolled patients. Caregivers were not included in this measure.
5 Participants
n=400 Participants • Current living situation was only collected for enrolled patients. Caregivers were not included in this measure.
Current living situation
In a Nursing Home
0 Participants
n=203 Participants • Current living situation was only collected for enrolled patients. Caregivers were not included in this measure.
3 Participants
n=197 Participants • Current living situation was only collected for enrolled patients. Caregivers were not included in this measure.
3 Participants
n=400 Participants • Current living situation was only collected for enrolled patients. Caregivers were not included in this measure.
Current living situation
Other/Unsure
6 Participants
n=203 Participants • Current living situation was only collected for enrolled patients. Caregivers were not included in this measure.
8 Participants
n=197 Participants • Current living situation was only collected for enrolled patients. Caregivers were not included in this measure.
14 Participants
n=400 Participants • Current living situation was only collected for enrolled patients. Caregivers were not included in this measure.
Current living situation
Refused to answer
3 Participants
n=203 Participants • Current living situation was only collected for enrolled patients. Caregivers were not included in this measure.
0 Participants
n=197 Participants • Current living situation was only collected for enrolled patients. Caregivers were not included in this measure.
3 Participants
n=400 Participants • Current living situation was only collected for enrolled patients. Caregivers were not included in this measure.
Cancer type
Genitourinary
21 Participants
n=203 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
20 Participants
n=197 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
41 Participants
n=400 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
Cancer type
Brain
1 Participants
n=203 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
0 Participants
n=197 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
1 Participants
n=400 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
Cancer type
Breast
18 Participants
n=203 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
31 Participants
n=197 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
49 Participants
n=400 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
Cancer type
Gynecologic
7 Participants
n=203 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
12 Participants
n=197 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
19 Participants
n=400 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
Cancer type
Gastrointestinal
39 Participants
n=203 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
38 Participants
n=197 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
77 Participants
n=400 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
Cancer type
Hepatobiliary
9 Participants
n=203 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
8 Participants
n=197 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
17 Participants
n=400 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
Cancer type
Head and Neck
10 Participants
n=203 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
10 Participants
n=197 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
20 Participants
n=400 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
Cancer type
Lung
48 Participants
n=203 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
34 Participants
n=197 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
82 Participants
n=400 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
Cancer type
Melanoma
1 Participants
n=203 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
0 Participants
n=197 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
1 Participants
n=400 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
Caregiver lives with the patient
98 Participants
n=133 Participants • Living with the enrolled patient was only collected for caregivers.
94 Participants
n=139 Participants • Living with the enrolled patient was only collected for caregivers.
192 Participants
n=272 Participants • Living with the enrolled patient was only collected for caregivers.
Cancer type
Pancreatic
20 Participants
n=203 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
22 Participants
n=197 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
42 Participants
n=400 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
Cancer type
Prostate
23 Participants
n=203 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
18 Participants
n=197 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
41 Participants
n=400 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
Cancer type
Other
6 Participants
n=203 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
4 Participants
n=197 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
10 Participants
n=400 Participants • Cancer type was only collected for enrolled patients. Caregivers were not included in this measure.
Time since first diagnosed with cancer
Less than one month ago
11 Participants
n=203 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
6 Participants
n=197 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
17 Participants
n=400 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
Time since first diagnosed with cancer
≥ 1 month but < 6 months ago
27 Participants
n=203 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
31 Participants
n=197 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
58 Participants
n=400 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
Time since first diagnosed with cancer
≥ 6 months but < 1 year ago
44 Participants
n=203 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
43 Participants
n=197 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
87 Participants
n=400 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
Time since first diagnosed with cancer
≥ 1 year but < 2 years ago
31 Participants
n=203 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
23 Participants
n=197 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
54 Participants
n=400 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
Time since first diagnosed with cancer
≥ 2 years but < 5 years ago
36 Participants
n=203 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
39 Participants
n=197 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
75 Participants
n=400 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
Time since first diagnosed with cancer
≥ 5 years ago
49 Participants
n=203 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
53 Participants
n=197 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
102 Participants
n=400 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
Time since first diagnosed with cancer
Refused to answer
4 Participants
n=203 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
2 Participants
n=197 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
6 Participants
n=400 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
Time since first diagnosed with cancer
Unknown
1 Participants
n=203 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
0 Participants
n=197 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
1 Participants
n=400 Participants • Time since first diagnosed with cancer was only collected for enrolled patients. Caregivers were not included in this measure.
Time receiving care from current oncologist
Less than one month
13 Participants
n=203 Participants • Time receiving care from current oncologist was only collected for enrolled patients. Caregivers were not included in this measure.
11 Participants
n=197 Participants • Time receiving care from current oncologist was only collected for enrolled patients. Caregivers were not included in this measure.
24 Participants
n=400 Participants • Time receiving care from current oncologist was only collected for enrolled patients. Caregivers were not included in this measure.
Time receiving care from current oncologist
≥ 1 month but < 6 months
40 Participants
n=203 Participants • Time receiving care from current oncologist was only collected for enrolled patients. Caregivers were not included in this measure.
36 Participants
n=197 Participants • Time receiving care from current oncologist was only collected for enrolled patients. Caregivers were not included in this measure.
76 Participants
n=400 Participants • Time receiving care from current oncologist was only collected for enrolled patients. Caregivers were not included in this measure.
Time receiving care from current oncologist
≥ 6 months but < 1 year
48 Participants
n=203 Participants • Time receiving care from current oncologist was only collected for enrolled patients. Caregivers were not included in this measure.
51 Participants
n=197 Participants • Time receiving care from current oncologist was only collected for enrolled patients. Caregivers were not included in this measure.
99 Participants
n=400 Participants • Time receiving care from current oncologist was only collected for enrolled patients. Caregivers were not included in this measure.
Time receiving care from current oncologist
≥ 1 year but < 2 years
35 Participants
n=203 Participants • Time receiving care from current oncologist was only collected for enrolled patients. Caregivers were not included in this measure.
29 Participants
n=197 Participants • Time receiving care from current oncologist was only collected for enrolled patients. Caregivers were not included in this measure.
64 Participants
n=400 Participants • Time receiving care from current oncologist was only collected for enrolled patients. Caregivers were not included in this measure.
Time receiving care from current oncologist
≥ 2 years but < 5 years
41 Participants
n=203 Participants • Time receiving care from current oncologist was only collected for enrolled patients. Caregivers were not included in this measure.
39 Participants
n=197 Participants • Time receiving care from current oncologist was only collected for enrolled patients. Caregivers were not included in this measure.
80 Participants
n=400 Participants • Time receiving care from current oncologist was only collected for enrolled patients. Caregivers were not included in this measure.
Time receiving care from current oncologist
≥ 5 years
23 Participants
n=203 Participants • Time receiving care from current oncologist was only collected for enrolled patients. Caregivers were not included in this measure.
31 Participants
n=197 Participants • Time receiving care from current oncologist was only collected for enrolled patients. Caregivers were not included in this measure.
54 Participants
n=400 Participants • Time receiving care from current oncologist was only collected for enrolled patients. Caregivers were not included in this measure.
Time receiving care from current oncologist
Refused to answer
3 Participants
n=203 Participants • Time receiving care from current oncologist was only collected for enrolled patients. Caregivers were not included in this measure.
0 Participants
n=197 Participants • Time receiving care from current oncologist was only collected for enrolled patients. Caregivers were not included in this measure.
3 Participants
n=400 Participants • Time receiving care from current oncologist was only collected for enrolled patients. Caregivers were not included in this measure.
ECOG Performance Status
ECOG Score - 0
64 Participants
n=203 Participants • ECOG score was only collected for enrolled patients. Caregivers were not included in this measure.
68 Participants
n=197 Participants • ECOG score was only collected for enrolled patients. Caregivers were not included in this measure.
132 Participants
n=400 Participants • ECOG score was only collected for enrolled patients. Caregivers were not included in this measure.
Current care provider for the patient
117 Participants
n=133 Participants • Care provider status was only collected for caregivers.
124 Participants
n=139 Participants • Care provider status was only collected for caregivers.
241 Participants
n=272 Participants • Care provider status was only collected for caregivers.
ECOG Performance Status
ECOG Score - 1
122 Participants
n=203 Participants • ECOG score was only collected for enrolled patients. Caregivers were not included in this measure.
102 Participants
n=197 Participants • ECOG score was only collected for enrolled patients. Caregivers were not included in this measure.
224 Participants
n=400 Participants • ECOG score was only collected for enrolled patients. Caregivers were not included in this measure.
ECOG Performance Status
ECOG Score - 2
17 Participants
n=203 Participants • ECOG score was only collected for enrolled patients. Caregivers were not included in this measure.
27 Participants
n=197 Participants • ECOG score was only collected for enrolled patients. Caregivers were not included in this measure.
44 Participants
n=400 Participants • ECOG score was only collected for enrolled patients. Caregivers were not included in this measure.
Patient reported previously completing a living will or advance directive
95 Participants
n=203 Participants • Previous living will or advance directive completion was only collected for enrolled patients. Caregivers were not included in this measure.
103 Participants
n=197 Participants • Previous living will or advance directive completion was only collected for enrolled patients. Caregivers were not included in this measure.
198 Participants
n=400 Participants • Previous living will or advance directive completion was only collected for enrolled patients. Caregivers were not included in this measure.
Patient reported previously having advance care planning discussions with caregivers
139 Participants
n=203 Participants • Previous advance care planning discussions were only collected for enrolled patients. Caregivers were not included in this measure.
136 Participants
n=197 Participants • Previous advance care planning discussions were only collected for enrolled patients. Caregivers were not included in this measure.
275 Participants
n=400 Participants • Previous advance care planning discussions were only collected for enrolled patients. Caregivers were not included in this measure.
Patient reported previously having advance care planning discussions with physicians
48 Participants
n=203 Participants • Previous advance care planning discussions were only collected for enrolled patients. Caregivers were not included in this measure.
53 Participants
n=197 Participants • Previous advance care planning discussions were only collected for enrolled patients. Caregivers were not included in this measure.
101 Participants
n=400 Participants • Previous advance care planning discussions were only collected for enrolled patients. Caregivers were not included in this measure.
Prior living will or advance directive in the medical record
24 Participants
n=203 Participants • Living will or advance directive information was collected only for patients.
27 Participants
n=197 Participants • Living will or advance directive information was collected only for patients.
51 Participants
n=400 Participants • Living will or advance directive information was collected only for patients.
Prior POLST form in the medical record
4 Participants
n=203 Participants • POLST form information was collected only for patients.
8 Participants
n=197 Participants • POLST form information was collected only for patients.
12 Participants
n=400 Participants • POLST form information was collected only for patients.
Advance Care Planning (ACP) Engagement Survey Total Scores
3.66 score on a scale
STANDARD_DEVIATION 0.93 • n=203 Participants • Advance Care Planning Engagement scores were only collected for enrolled patients. Caregivers were not included in this measure.
3.74 score on a scale
STANDARD_DEVIATION 1.02 • n=197 Participants • Advance Care Planning Engagement scores were only collected for enrolled patients. Caregivers were not included in this measure.
3.70 score on a scale
STANDARD_DEVIATION 0.98 • n=400 Participants • Advance Care Planning Engagement scores were only collected for enrolled patients. Caregivers were not included in this measure.
Relationship to enrolled patient
Spouse/partner
90 Participants
n=133 Participants • Relationship to enrolled patient was only collected for caregivers.
85 Participants
n=139 Participants • Relationship to enrolled patient was only collected for caregivers.
175 Participants
n=272 Participants • Relationship to enrolled patient was only collected for caregivers.
Relationship to enrolled patient
Child
25 Participants
n=133 Participants • Relationship to enrolled patient was only collected for caregivers.
24 Participants
n=139 Participants • Relationship to enrolled patient was only collected for caregivers.
49 Participants
n=272 Participants • Relationship to enrolled patient was only collected for caregivers.
Relationship to enrolled patient
Parent
5 Participants
n=133 Participants • Relationship to enrolled patient was only collected for caregivers.
4 Participants
n=139 Participants • Relationship to enrolled patient was only collected for caregivers.
9 Participants
n=272 Participants • Relationship to enrolled patient was only collected for caregivers.
Relationship to enrolled patient
Sibling
6 Participants
n=133 Participants • Relationship to enrolled patient was only collected for caregivers.
12 Participants
n=139 Participants • Relationship to enrolled patient was only collected for caregivers.
18 Participants
n=272 Participants • Relationship to enrolled patient was only collected for caregivers.
Relationship to enrolled patient
Friend
2 Participants
n=133 Participants • Relationship to enrolled patient was only collected for caregivers.
5 Participants
n=139 Participants • Relationship to enrolled patient was only collected for caregivers.
7 Participants
n=272 Participants • Relationship to enrolled patient was only collected for caregivers.
Relationship to enrolled patient
Other
4 Participants
n=133 Participants • Relationship to enrolled patient was only collected for caregivers.
9 Participants
n=139 Participants • Relationship to enrolled patient was only collected for caregivers.
13 Participants
n=272 Participants • Relationship to enrolled patient was only collected for caregivers.
Relationship to enrolled patient
Refused to answer
1 Participants
n=133 Participants • Relationship to enrolled patient was only collected for caregivers.
0 Participants
n=139 Participants • Relationship to enrolled patient was only collected for caregivers.
1 Participants
n=272 Participants • Relationship to enrolled patient was only collected for caregivers.
Average days per week providing care
5.33 days per week
STANDARD_DEVIATION 2.3 • n=133 Participants • Average days providing care was only collected for caregivers.
5.59 days per week
STANDARD_DEVIATION 2.3 • n=139 Participants • Average days providing care was only collected for caregivers.
5.46 days per week
STANDARD_DEVIATION 2.3 • n=272 Participants • Average days providing care was only collected for caregivers.
Average hours per day providing care
6.92 hours per day
STANDARD_DEVIATION 8.1 • n=133 Participants • Average hours providing care was only collected for caregivers.
7.15 hours per day
STANDARD_DEVIATION 7.9 • n=139 Participants • Average hours providing care was only collected for caregivers.
7.03 hours per day
STANDARD_DEVIATION 8.0 • n=272 Participants • Average hours providing care was only collected for caregivers.
Currently providing care for anyone else
29 Participants
n=133 Participants • Providing care for anyone else was only collected for caregivers.
31 Participants
n=139 Participants • Providing care for anyone else was only collected for caregivers.
60 Participants
n=272 Participants • Providing care for anyone else was only collected for caregivers.

PRIMARY outcome

Timeframe: 12 weeks

Population: Number of participants that completed 12 week outcomes assessment.

15-item Advance Care Planning (ACP) engagement survey assesses ACP processes related to choosing a medical decision maker, discussing and documenting preference for care at end of life, flexibility for surrogate decision making, and asking questions of medical providers. A single summary score will be reported (range 0-5 with higher scores indicating higher engagement).

Outcome measures

Outcome measures
Measure
Web-based Advance Care Planning (PATIENTS)
n=134 Participants
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
n=135 Participants
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Advance Care Planning Engagement
4.08 score on a scale
Standard Deviation 0.82
4.34 score on a scale
Standard Deviation 0.78

SECONDARY outcome

Timeframe: 12 weeks

Population: Number of participants that completed 12 week outcomes assessment.

"Has \[participant\] talked with \[participant's\] family or friends about the kind of medical care \[participant\] would want if \[participant\] were very sick or near the end of life?"

Outcome measures

Outcome measures
Measure
Web-based Advance Care Planning (PATIENTS)
n=134 Participants
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
n=135 Participants
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Number of Participants Who Have Had Advance Care Planning Discussions With Caregivers
117 Participants
120 Participants

SECONDARY outcome

Timeframe: 12 weeks

Population: Number of participants that completed 12 week outcomes assessment.

"Has \[participant\] talked with \[participant's\] doctor about the kind of medical care \[participant\] would want if \[participant\] were very sick or near the end of life?"

Outcome measures

Outcome measures
Measure
Web-based Advance Care Planning (PATIENTS)
n=134 Participants
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
n=135 Participants
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Number of Participants Who Have Had Advance Care Planning Discussions With Physicians
54 Participants
67 Participants

SECONDARY outcome

Timeframe: 12 weeks

Population: Number of participants that completed 12 week outcomes assessment.

"Has \[participant\] completed a living will or advance directive?"

Outcome measures

Outcome measures
Measure
Web-based Advance Care Planning (PATIENTS)
n=134 Participants
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
n=135 Participants
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Number of Participants Who Have Completed an Advance Directive
80 Participants
101 Participants

SECONDARY outcome

Timeframe: 12 weeks

Investigators will assess documented care goals by reviewing medical records for any care goals documented since baseline (Yes/No).

Outcome measures

Outcome measures
Measure
Web-based Advance Care Planning (PATIENTS)
n=203 Participants
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
n=197 Participants
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Documented Care Goals
New Goals of Care discussion
26 participants
22 participants
Documented Care Goals
New advance directive or living will
4 participants
18 participants
Documented Care Goals
New Physician Orders for Life-sustaining Treatment (POLST) form
1 participants
8 participants
Documented Care Goals
New Code Status
29 participants
31 participants

SECONDARY outcome

Timeframe: 12 weeks

Depression subscale of the 14-item Hospital Anxiety and Depression Scale (HADS) will be used to assess caregiver depression symptoms at 12 weeks and bereavement. The HADS depression subscale scores range from 0 to 21, with higher scores indicating more distress.

Outcome measures

Outcome measures
Measure
Web-based Advance Care Planning (PATIENTS)
n=102 Participants
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
n=108 Participants
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Caregiver Depression Symptoms
4.34 score on a scale
Standard Deviation 4.07
3.69 score on a scale
Standard Deviation 3.57

SECONDARY outcome

Timeframe: 12 weeks

Anxiety subscale of the 14-item Hospital Anxiety and Depression Scale (HADS) will be used to assess caregiver anxiety symptoms at 12 weeks and bereavement. The anxiety subscale scores range from 0 to 21, with higher scores indicating more distress.

Outcome measures

Outcome measures
Measure
Web-based Advance Care Planning (PATIENTS)
n=102 Participants
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
n=108 Participants
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Caregiver Anxiety Symptoms
6.94 score on a scale
Standard Deviation 4.6
6.5 score on a scale
Standard Deviation 3.92

SECONDARY outcome

Timeframe: during bereavement, up to 60 months

Population: Bereaved caregivers

Bereaved caregivers will be asked "In \[participant's\] opinion, to what extent were \[the patient's\] wishes followed in the medical care received in the last month of life?" Receipt of goal-concordant end-of-life care - patient wishes followed will be defined as care that "followed patients' wishes a great deal."

Outcome measures

Outcome measures
Measure
Web-based Advance Care Planning (PATIENTS)
n=50 Participants
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
n=48 Participants
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Receipt of Goal-concordant End-of-life Care - Patient Wishes Followed
Not at all
1 Participants
0 Participants
Receipt of Goal-concordant End-of-life Care - Patient Wishes Followed
A great deal
37 Participants
46 Participants
Receipt of Goal-concordant End-of-life Care - Patient Wishes Followed
Somewhat
11 Participants
2 Participants
Receipt of Goal-concordant End-of-life Care - Patient Wishes Followed
Did not answer
1 Participants
0 Participants

SECONDARY outcome

Timeframe: during bereavement, up to 60 months

Population: Bereaved caregivers

Bereaved caregivers will be asked about patient's preferred and actual places of death, with questions separated in the survey to minimize conscious comparison. Receipt of goal-concordant end-of-life care - place of death will be defined as patients dying in their preferred location.

Outcome measures

Outcome measures
Measure
Web-based Advance Care Planning (PATIENTS)
n=50 Participants
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
n=48 Participants
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Receipt of Goal-concordant End-of-life Care - Place of Death
34 Participants
37 Participants

SECONDARY outcome

Timeframe: during bereavement, up to 60 months

Population: Bereaved caregivers

13-item Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL) scale. Total score range is 13-26, with higher scores indicating better perceived quality of care. Prolongation of Death, Perceived Suffering, and Preparation for the Death Subscales range 3-6, with higher scores indicating a better outcome. Shared Decision-Making subscale range is 4-8, with higher scores indicating a better outcome.

Outcome measures

Outcome measures
Measure
Web-based Advance Care Planning (PATIENTS)
n=50 Participants
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
n=48 Participants
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Quality of End-of-life Care
Prolongation of Death subscale
5.62 score on a scale
Standard Deviation 0.78
5.69 score on a scale
Standard Deviation 0.62
Quality of End-of-life Care
Perceived Suffering Subscale
5.51 score on a scale
Standard Deviation 0.83
5.45 score on a scale
Standard Deviation 0.91
Quality of End-of-life Care
Shared Decision-Making subscale
7.67 score on a scale
Standard Deviation 0.74
7.7 score on a scale
Standard Deviation 0.68
Quality of End-of-life Care
Preparation for the Death subscale
5.66 score on a scale
Standard Deviation 0.72
5.51 score on a scale
Standard Deviation 0.72
Quality of End-of-life Care
Total Score
24.45 score on a scale
Standard Deviation 2.05
24.35 score on a scale
Standard Deviation 1.83

SECONDARY outcome

Timeframe: during bereavement, up to 60 months

Population: Bereaved caregivers

22-item Impact of Events Scale-revised has a scoring range from 0-88, with a higher total score indicating more post-traumatic stress symptoms. Avoidance, Intrusions, and Hyperarousal Subscales range 0-4, with higher scores indicating a worse outcome.

Outcome measures

Outcome measures
Measure
Web-based Advance Care Planning (PATIENTS)
n=50 Participants
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
n=48 Participants
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Caregiver Post-traumatic Stress Symptoms
Avoidance subscale
1.15 score on a scale
Standard Deviation 0.64
0.96 score on a scale
Standard Deviation 0.79
Caregiver Post-traumatic Stress Symptoms
Intrusions Subscale
1.99 score on a scale
Standard Deviation 0.89
1.48 score on a scale
Standard Deviation 0.86
Caregiver Post-traumatic Stress Symptoms
Hyperarousal Subscale
1.06 score on a scale
Standard Deviation 0.84
0.74 score on a scale
Standard Deviation 0.64
Caregiver Post-traumatic Stress Symptoms
IES-R Total Score
31.5 score on a scale
Standard Deviation 15.2
23.9 score on a scale
Standard Deviation 14.6

SECONDARY outcome

Timeframe: bereavement, up to 60 months

Population: Bereaved caregivers

Depression subscale of the 14-item Hospital Anxiety and Depression Scale (HADS) will be used to assess caregiver depression symptoms at 12 weeks and bereavement. The HADS depression subscale scores range from 0 to 21, with higher scores indicating more distress.

Outcome measures

Outcome measures
Measure
Web-based Advance Care Planning (PATIENTS)
n=50 Participants
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
n=48 Participants
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Caregiver Depression Symptoms
5.87 score on a scale
Standard Deviation 4.11
5.34 score on a scale
Standard Deviation 6.56

SECONDARY outcome

Timeframe: during bereavement, up to 60 months

Population: Bereaved caregivers

Anxiety subscale of the 14-item Hospital Anxiety and Depression Scale (HADS) will be used to assess caregiver anxiety symptoms at 12 weeks and bereavement. The anxiety subscale scores range from 0 to 21, with higher scores indicating more distress.

Outcome measures

Outcome measures
Measure
Web-based Advance Care Planning (PATIENTS)
n=50 Participants
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
n=48 Participants
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Caregiver Anxiety Symptoms
6.72 score on a scale
Standard Deviation 4.59
6.56 score on a scale
Standard Deviation 3.32

OTHER_PRE_SPECIFIED outcome

Timeframe: Assessed after patient death

Population: Deceased patients

Investigators will measure whether chemotherapy was administered within the last 2 weeks of life (Y/N)

Outcome measures

Outcome measures
Measure
Web-based Advance Care Planning (PATIENTS)
n=112 Participants
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
n=116 Participants
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Number of Participants Who Received Chemotherapy Within Last 2 Weeks of Life
12 Participants
5 Participants

OTHER_PRE_SPECIFIED outcome

Timeframe: Assessed after patient death

Population: Deceased patients

Investigators will measure whether participant was admitted to the intensive care unit in the last 30 days of life (Y/N)

Outcome measures

Outcome measures
Measure
Web-based Advance Care Planning (PATIENTS)
n=112 Participants
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
n=116 Participants
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Number of Participants Admitted to an Intensive Care Unit Within Last 30 Days of Life
20 Participants
16 Participants

OTHER_PRE_SPECIFIED outcome

Timeframe: Assessed after patient death

Population: Deceased patients

Investigators will measure whether the participant was admitted to hospice (Y/N)

Outcome measures

Outcome measures
Measure
Web-based Advance Care Planning (PATIENTS)
n=112 Participants
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
n=116 Participants
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Number of Participants Admitted to Hospice Within Last 30 Days of Life
64 Participants
76 Participants

OTHER_PRE_SPECIFIED outcome

Timeframe: Assessed after patient death

Population: Deceased patients

Investigators will measure whether the participant was admitted to hospice for \< 3 days (Y/N)

Outcome measures

Outcome measures
Measure
Web-based Advance Care Planning (PATIENTS)
n=112 Participants
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
n=116 Participants
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Number of Participants Admitted to Hospice Within Last 3 Days of Life
19 Participants
25 Participants

OTHER_PRE_SPECIFIED outcome

Timeframe: Assessed after patient death

Population: Deceased patients

For participants admitted to hospice, investigators will measure number of days in hospice.

Outcome measures

Outcome measures
Measure
Web-based Advance Care Planning (PATIENTS)
n=64 Participants
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
n=76 Participants
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Healthcare Utilization at End of Life - Hospice Length of Stay
15.8 days
Standard Deviation 19.7
27.8 days
Standard Deviation 41.8

OTHER_PRE_SPECIFIED outcome

Timeframe: Assess after patient death

Population: Deceased patients

Investigators will measure the number of participants hospitalized within in the last 30 days of life

Outcome measures

Outcome measures
Measure
Web-based Advance Care Planning (PATIENTS)
n=112 Participants
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
n=116 Participants
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Number of Participants Who Were Hospitalized Within Last 30 Days of Life
74 Participants
67 Participants

OTHER_PRE_SPECIFIED outcome

Timeframe: Assessed after patient death

Population: Deceased patients

Investigators will measure number of emergency department visits in the last 30 days of life

Outcome measures

Outcome measures
Measure
Web-based Advance Care Planning (PATIENTS)
n=112 Participants
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
n=116 Participants
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Number of Participants Who Had Emergency Department Visits Within Last 30 Days of Life
64 Participants
58 Participants

OTHER_PRE_SPECIFIED outcome

Timeframe: through study completion, up to 5 years

Investigators will assess advance care planning implementation costs by tracking staff time spent on each intervention arm. Staff time costs for each intervention will be estimated by multiplying staff training and patient care time related to the intervention in hours by the average hourly wage for US nursing and social work staff of comparable levels.

Outcome measures

Outcome data not reported

Adverse Events

Web-based Advance Care Planning (PATIENTS)

Serious events: 0 serious events
Other events: 0 other events
Deaths: 112 deaths

Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)

Serious events: 0 serious events
Other events: 1 other events
Deaths: 116 deaths

Web-based Advance Care Planning (CAREGIVERS)

Serious events: 0 serious events
Other events: 0 other events
Deaths: 0 deaths

Facilitated Advance Care Planning (In-person or Telephonic) (CAREGIVERS)

Serious events: 0 serious events
Other events: 0 other events
Deaths: 0 deaths

Serious adverse events

Adverse event data not reported

Other adverse events

Other adverse events
Measure
Web-based Advance Care Planning (PATIENTS)
n=203 participants at risk
Patients randomized to this arm will participate in web-based ACP via the PREPARE website. Web-based advance care planning: Instructions for accessing and using the PREPARE website will be shared with participants upon randomization. Patients and their caregivers review the 5 steps of PREPARE (approximately 10 minutes per step) and create an action plan for each step. The PREPARE website includes a link to a written advance directive that participants are able to complete. The PREPARE website can be reviewed on a home computer or on a tablet in the oncology practice.
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
n=197 participants at risk
Patients randomized to this arm will participate in in-person or telephonic facilitated advance care planning (ACP) discussions using the Respecting Choices model. Facilitated advance care planning (in-person or telephonic): The facilitator will contact the patient to schedule the ACP discussion. ACP discussions will be led by a nurse or social worker with supportive oncology experience who has been trained as a Respecting Choices facilitator, include the patient's caregiver when available, last 45-60 minutes, and be held in a private location at or near the patient's oncology clinic, or telephonically. Facilitators will use a structured interview tool as a discussion roadmap and provide guidance in choosing a medical decision maker, exploring serious illness understanding and experiences, identifying goals and values, and making future treatment decisions. Facilitators will provide a copy of a written advance directive, assist with completion when appropriate, and make recommendations for communicating goals and sharing written preferences.
Web-based Advance Care Planning (CAREGIVERS)
n=133 participants at risk
Enrolled caregivers of patients randomized to the web-based advance care planning arm.
Facilitated Advance Care Planning (In-person or Telephonic) (CAREGIVERS)
n=139 participants at risk
Enrolled caregivers of patients randomized to the facilitated advance care planning arm.
Psychiatric disorders
Suicidal ideation
0.00%
0/203 • up to 60 months
0.51%
1/197 • Number of events 1 • up to 60 months
0.00%
0/133 • up to 60 months
0.00%
0/139 • up to 60 months
Psychiatric disorders
Homicidal ideation
0.00%
0/203 • up to 60 months
0.51%
1/197 • Number of events 1 • up to 60 months
0.00%
0/133 • up to 60 months
0.00%
0/139 • up to 60 months

Additional Information

Yael Schenker, MD, MAS, FAAHPM

University of Pittsburgh

Phone: 415-254-9958

Results disclosure agreements

  • Principal investigator is a sponsor employee
  • Publication restrictions are in place