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).
COMPLETED
NA
672 participants
12 weeks
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
| 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
| 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 weeksPopulation: 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
| 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 weeksPopulation: 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
| 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 weeksPopulation: 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
| 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 weeksPopulation: Number of participants that completed 12 week outcomes assessment.
"Has \[participant\] completed a living will or advance directive?"
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 weeksInvestigators will assess documented care goals by reviewing medical records for any care goals documented since baseline (Yes/No).
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 weeksDepression 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
| 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 weeksAnxiety 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
| 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 monthsPopulation: 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
| 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 monthsPopulation: 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
| 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 monthsPopulation: 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
| 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 monthsPopulation: 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
| 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 monthsPopulation: 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
| 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 monthsPopulation: 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
| 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 deathPopulation: Deceased patients
Investigators will measure whether chemotherapy was administered within the last 2 weeks of life (Y/N)
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 deathPopulation: 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
| 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 deathPopulation: Deceased patients
Investigators will measure whether the participant was admitted to hospice (Y/N)
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 deathPopulation: Deceased patients
Investigators will measure whether the participant was admitted to hospice for \< 3 days (Y/N)
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 deathPopulation: Deceased patients
For participants admitted to hospice, investigators will measure number of days in hospice.
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 deathPopulation: Deceased patients
Investigators will measure the number of participants hospitalized within in the last 30 days of life
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 deathPopulation: Deceased patients
Investigators will measure number of emergency department visits in the last 30 days of life
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 yearsInvestigators 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)
Facilitated Advance Care Planning (In-person or Telephonic) (PATIENTS)
Web-based Advance Care Planning (CAREGIVERS)
Facilitated Advance Care Planning (In-person or Telephonic) (CAREGIVERS)
Serious adverse events
Adverse event data not reported
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
Results disclosure agreements
- Principal investigator is a sponsor employee
- Publication restrictions are in place