Trial Outcomes & Findings for Involving Family to Improve Communication in Breast Cancer Care (NCT NCT03283553)

NCT ID: NCT03283553

Last Updated: 2021-03-19

Results Overview

Illness understanding was measured by 4 questions regarding knowledge that is considered to be essential to making informed treatment decisions in serious illness, including: 1.) understanding of illness, 2.) knowledge of disease status, 3.) awareness of disease state, and 4.) expectation of duration of life. We summed responses to each item (coded 1 or 0 to reflect the presence or absence of understanding), yielding a score ranging from 0 to 4. Participants with perfect scores reflecting complete illness understanding (4 of 4 correct responses) were compared to all others.

Recruitment status

COMPLETED

Study phase

NA

Target enrollment

132 participants

Primary outcome timeframe

9 months

Results posted on

2021-03-19

Participant Flow

Patients of participating clinicians who were in active treatment for early stage or advanced breast cancer were mailed letters describing the study 3 weeks before their next scheduled visit. Patients who did not "opt out" by mail were contacted by research staff to discuss study procedures and administer a screening interview.

Participant milestones

Participant milestones
Measure
Multicomponent Intervention
1.) A one-page paper-pencil agenda setting checklist completed immediately before a regularly scheduled medical oncology visit to elicit and align patient and companion perspectives regarding issues to discuss with the provider, and to stimulate discussion about the role of the companion in the visit, 2.) facilitated registration for the patient portal (for patient and family member, as desired by the patient), and 3.) education (as relevant) on access to doctor's electronic visit notes.
Usual Care
Care as usual with the medical oncologist.
Patient Participant Flow
STARTED
69
63
Patient Participant Flow
Patient Baseline Interview
69
62
Patient Participant Flow
Patient 3-Month Interview
67
60
Patient Participant Flow
Patient 9-Month Interview
63
57
Patient Participant Flow
Patient 12-Month Interview
59
50
Patient Participant Flow
COMPLETED
59
50
Patient Participant Flow
NOT COMPLETED
10
13
Care Partner Participant Flow
STARTED
69
63
Care Partner Participant Flow
Care Partner Baseline Interview
69
63
Care Partner Participant Flow
Care Partner 3-Month Interview
69
60
Care Partner Participant Flow
Care Partner 9-Month Interview
64
55
Care Partner Participant Flow
Care Partner 12-Month Interview
59
48
Care Partner Participant Flow
COMPLETED
59
48
Care Partner Participant Flow
NOT COMPLETED
10
15

Reasons for withdrawal

Reasons for withdrawal
Measure
Multicomponent Intervention
1.) A one-page paper-pencil agenda setting checklist completed immediately before a regularly scheduled medical oncology visit to elicit and align patient and companion perspectives regarding issues to discuss with the provider, and to stimulate discussion about the role of the companion in the visit, 2.) facilitated registration for the patient portal (for patient and family member, as desired by the patient), and 3.) education (as relevant) on access to doctor's electronic visit notes.
Usual Care
Care as usual with the medical oncologist.
Patient Participant Flow
Death
5
10
Patient Participant Flow
Withdrawal by Subject
4
2
Patient Participant Flow
Lost to Follow-up
1
1
Care Partner Participant Flow
Withdrawal by Subject
4
3
Care Partner Participant Flow
Lost to Follow-up
1
1
Care Partner Participant Flow
Discontinued because patient death
5
11

Baseline Characteristics

Involving Family to Improve Communication in Breast Cancer Care

Baseline characteristics by cohort

Baseline characteristics by cohort
Measure
Multicomponent Intervention
n=69 Participants
1.) A one-page paper-pencil agenda setting checklist completed immediately before a regularly scheduled medical oncology visit to elicit and align patient and companion perspectives regarding issues to discuss with the provider, and to stimulate discussion about the role of the companion in the visit, 2.) facilitated registration for the patient portal (for patient and family member, as desired by the patient), and 3.) education (as relevant) on access to doctor's electronic visit notes.
Usual Care
n=63 Participants
Care as usual with the medical oncologist.
Total
n=132 Participants
Total of all reporting groups
Age, Continuous
Patient age
55.1 years
STANDARD_DEVIATION 13.4 • n=5 Participants
52.9 years
STANDARD_DEVIATION 14.5 • n=7 Participants
54.1 years
STANDARD_DEVIATION 13.9 • n=5 Participants
Age, Continuous
Care Partner age
54.0 years
STANDARD_DEVIATION 13.79 • n=5 Participants
54.0 years
STANDARD_DEVIATION 13.5 • n=7 Participants
54 years
STANDARD_DEVIATION 13.61 • n=5 Participants
Sex: Female, Male
Patient sex · Female
68 Participants
n=5 Participants
63 Participants
n=7 Participants
131 Participants
n=5 Participants
Sex: Female, Male
Patient sex · Male
1 Participants
n=5 Participants
0 Participants
n=7 Participants
1 Participants
n=5 Participants
Sex: Female, Male
Care Partner sex · Female
28 Participants
n=5 Participants
18 Participants
n=7 Participants
46 Participants
n=5 Participants
Sex: Female, Male
Care Partner sex · Male
41 Participants
n=5 Participants
45 Participants
n=7 Participants
86 Participants
n=5 Participants
Ethnicity (NIH/OMB)
Patient Ethnicity · Hispanic or Latino
4 Participants
n=5 Participants
3 Participants
n=7 Participants
7 Participants
n=5 Participants
Ethnicity (NIH/OMB)
Patient Ethnicity · Not Hispanic or Latino
64 Participants
n=5 Participants
60 Participants
n=7 Participants
124 Participants
n=5 Participants
Ethnicity (NIH/OMB)
Patient Ethnicity · Unknown or Not Reported
1 Participants
n=5 Participants
0 Participants
n=7 Participants
1 Participants
n=5 Participants
Ethnicity (NIH/OMB)
Care Partner Ethnicity · Hispanic or Latino
2 Participants
n=5 Participants
3 Participants
n=7 Participants
5 Participants
n=5 Participants
Ethnicity (NIH/OMB)
Care Partner Ethnicity · Not Hispanic or Latino
65 Participants
n=5 Participants
60 Participants
n=7 Participants
125 Participants
n=5 Participants
Ethnicity (NIH/OMB)
Care Partner Ethnicity · Unknown or Not Reported
2 Participants
n=5 Participants
0 Participants
n=7 Participants
2 Participants
n=5 Participants
Race (NIH/OMB)
Patient Race · American Indian or Alaska Native
0 Participants
n=5 Participants
0 Participants
n=7 Participants
0 Participants
n=5 Participants
Race (NIH/OMB)
Patient Race · Asian
1 Participants
n=5 Participants
2 Participants
n=7 Participants
3 Participants
n=5 Participants
Race (NIH/OMB)
Patient Race · Native Hawaiian or Other Pacific Islander
0 Participants
n=5 Participants
0 Participants
n=7 Participants
0 Participants
n=5 Participants
Race (NIH/OMB)
Patient Race · Black or African American
12 Participants
n=5 Participants
14 Participants
n=7 Participants
26 Participants
n=5 Participants
Race (NIH/OMB)
Patient Race · White
55 Participants
n=5 Participants
44 Participants
n=7 Participants
99 Participants
n=5 Participants
Race (NIH/OMB)
Patient Race · More than one race
1 Participants
n=5 Participants
3 Participants
n=7 Participants
4 Participants
n=5 Participants
Race (NIH/OMB)
Patient Race · Unknown or Not Reported
0 Participants
n=5 Participants
0 Participants
n=7 Participants
0 Participants
n=5 Participants
Race (NIH/OMB)
Care Partner Race · American Indian or Alaska Native
0 Participants
n=5 Participants
0 Participants
n=7 Participants
0 Participants
n=5 Participants
Race (NIH/OMB)
Care Partner Race · Asian
1 Participants
n=5 Participants
3 Participants
n=7 Participants
4 Participants
n=5 Participants
Race (NIH/OMB)
Care Partner Race · Native Hawaiian or Other Pacific Islander
0 Participants
n=5 Participants
1 Participants
n=7 Participants
1 Participants
n=5 Participants
Race (NIH/OMB)
Care Partner Race · Black or African American
11 Participants
n=5 Participants
16 Participants
n=7 Participants
27 Participants
n=5 Participants
Race (NIH/OMB)
Care Partner Race · White
55 Participants
n=5 Participants
40 Participants
n=7 Participants
95 Participants
n=5 Participants
Race (NIH/OMB)
Care Partner Race · More than one race
0 Participants
n=5 Participants
0 Participants
n=7 Participants
0 Participants
n=5 Participants
Race (NIH/OMB)
Care Partner Race · Unknown or Not Reported
2 Participants
n=5 Participants
3 Participants
n=7 Participants
5 Participants
n=5 Participants
Region of Enrollment
United States
69 Participants
n=5 Participants
63 Participants
n=7 Participants
132 Participants
n=5 Participants
Breast Cancer Disease Stage
Early Stage Breast Cancer
35 Participants
n=5 Participants
37 Participants
n=7 Participants
72 Participants
n=5 Participants
Breast Cancer Disease Stage
Metastatic Breast Cancer
34 Participants
n=5 Participants
26 Participants
n=7 Participants
60 Participants
n=5 Participants

PRIMARY outcome

Timeframe: 9 months

Population: The analysis sample includes the 118 patient-care-partner dyads with complete assessments at 9-months.

Illness understanding was measured by 4 questions regarding knowledge that is considered to be essential to making informed treatment decisions in serious illness, including: 1.) understanding of illness, 2.) knowledge of disease status, 3.) awareness of disease state, and 4.) expectation of duration of life. We summed responses to each item (coded 1 or 0 to reflect the presence or absence of understanding), yielding a score ranging from 0 to 4. Participants with perfect scores reflecting complete illness understanding (4 of 4 correct responses) were compared to all others.

Outcome measures

Outcome measures
Measure
Multicomponent Intervention
n=63 Participants
1.) A one-page paper-pencil agenda setting checklist completed immediately before a regularly scheduled medical oncology visit to elicit and align patient and companion perspectives regarding issues to discuss with the provider, and to stimulate discussion about the role of the companion in the visit, 2.) facilitated registration for the patient portal (for patient and family member, as desired by the patient), and 3.) education (as relevant) on access to doctor's electronic visit notes.
Usual Care
n=55 Participants
Care as usual with the medical oncologist.
Between-group Differences in Patient Complete Illness Understanding at 9-months
Complete Illness Understanding at 9-Months
42 Participants
38 Participants
Between-group Differences in Patient Complete Illness Understanding at 9-months
Not Complete Illness Understanding at 9-Months
21 Participants
17 Participants

PRIMARY outcome

Timeframe: 9 months

Population: The analysis sample includes the 118 patient-care-partner dyads with complete assessments at 9-months.

Outcome was measured with the short-form 10-item version of the Family Satisfaction with Cancer Care (FAMCARE) questionnaire, a validated multi-item instrument that was developed to assess family perspective on cancer care. Respondents are asked to rate 10 items that relate to emotional support, personalization of care, support of decision-making, accessibility, and coordination. Response categories include "very satisfied" (2 points), "satisfied" (1 point), or "not satisfied" (0 points), and the 10-items may be summed to yield a total score (range: 0 to 20) with higher scores reflecting greater satisfaction.

Outcome measures

Outcome measures
Measure
Multicomponent Intervention
n=63 Participants
1.) A one-page paper-pencil agenda setting checklist completed immediately before a regularly scheduled medical oncology visit to elicit and align patient and companion perspectives regarding issues to discuss with the provider, and to stimulate discussion about the role of the companion in the visit, 2.) facilitated registration for the patient portal (for patient and family member, as desired by the patient), and 3.) education (as relevant) on access to doctor's electronic visit notes.
Usual Care
n=55 Participants
Care as usual with the medical oncologist.
Between-group Differences in Mean Patient Satisfaction With Cancer Care at 9-months
16.9 score on a scale
Standard Deviation 3.9
15.4 score on a scale
Standard Deviation 5.4

PRIMARY outcome

Timeframe: 9 months

Population: The analysis sample includes the 118 patient-care-partner dyads with complete assessments at 9-months.

Outcome was measured using the Generalized Anxiety Disorder 2-item questionnaire (GAD-2), a well-established 2-item instrument that asks about symptoms of anxiety in a two-week recall period from 0 ("not at all") to 3 ("nearly every day"). Full range is 0-6 with higher scores indicating more anxiety. Symptoms of anxiety refer to a cutpoint of 3+ on the GAD-2.

Outcome measures

Outcome measures
Measure
Multicomponent Intervention
n=63 Participants
1.) A one-page paper-pencil agenda setting checklist completed immediately before a regularly scheduled medical oncology visit to elicit and align patient and companion perspectives regarding issues to discuss with the provider, and to stimulate discussion about the role of the companion in the visit, 2.) facilitated registration for the patient portal (for patient and family member, as desired by the patient), and 3.) education (as relevant) on access to doctor's electronic visit notes.
Usual Care
n=55 Participants
Care as usual with the medical oncologist.
Between-group Differences in Patient Anxiety at 9-months
Symptoms of Anxiety at 9-Months
7 Participants
8 Participants
Between-group Differences in Patient Anxiety at 9-months
No Symptoms of Anxiety at 9-Months
56 Participants
47 Participants

PRIMARY outcome

Timeframe: 9 months

Population: The analysis sample includes the 118 patient-care-partner dyads with complete assessments at 9-months.

Illness understanding was measured by 4 questions regarding knowledge that is considered to be essential to making informed treatment decisions in serious illness, including: 1.) understanding of illness, 2.) knowledge of disease status, 3.) awareness of disease state, and 4.) expectation of duration of life. We summed responses to each item (coded 1 or 0 to reflect the presence or absence of understanding), yielding a score ranging from 0 to 4. Participants with perfect scores reflecting complete illness understanding (4 of 4 correct responses) were compared to all others.

Outcome measures

Outcome measures
Measure
Multicomponent Intervention
n=63 Participants
1.) A one-page paper-pencil agenda setting checklist completed immediately before a regularly scheduled medical oncology visit to elicit and align patient and companion perspectives regarding issues to discuss with the provider, and to stimulate discussion about the role of the companion in the visit, 2.) facilitated registration for the patient portal (for patient and family member, as desired by the patient), and 3.) education (as relevant) on access to doctor's electronic visit notes.
Usual Care
n=55 Participants
Care as usual with the medical oncologist.
Between-group Differences in Care Partner Complete Illness Understanding at 9-months
Not Complete Illness Understanding at 9-Months
19 Participants
16 Participants
Between-group Differences in Care Partner Complete Illness Understanding at 9-months
Complete Illness Understanding at 9-Months
44 Participants
39 Participants

PRIMARY outcome

Timeframe: 9 months

Population: The analysis sample includes the 118 patient-care-partner dyads with complete assessments at 9-months.

Outcome was measured with the short-form 10-item version of the FAMCARE (Family Satisfaction with Cancer Care) questionnaire, a validated multi-item instrument that was developed to assess family perspective on cancer care. Respondents are asked to rate 10 items that relate to emotional support, personalization of care, support of decision-making, accessibility, and coordination. Response categories include "very satisfied" (2 points), "satisfied" (1 point), or "not satisfied" (0 points), and the 10-items may be summed to yield a total score (range: 0 to 20) with higher scores reflecting greater satisfaction.

Outcome measures

Outcome measures
Measure
Multicomponent Intervention
n=63 Participants
1.) A one-page paper-pencil agenda setting checklist completed immediately before a regularly scheduled medical oncology visit to elicit and align patient and companion perspectives regarding issues to discuss with the provider, and to stimulate discussion about the role of the companion in the visit, 2.) facilitated registration for the patient portal (for patient and family member, as desired by the patient), and 3.) education (as relevant) on access to doctor's electronic visit notes.
Usual Care
n=55 Participants
Care as usual with the medical oncologist.
Between-group Differences in Care Partner Satisfaction With Cancer Care at 9-months
15.7 score on a scale
Standard Deviation 4.4
15.4 score on a scale
Standard Deviation 5.5

PRIMARY outcome

Timeframe: 9 months

Population: The analysis sample includes the 118 patient-care-partner dyads with complete assessments at 9-months.

Outcome was measured using the Generalized Anxiety Disorder 2-item questionnaire (GAD-2), a well-established 2-item instrument that asks about symptoms of anxiety in a two-week recall period from 0 ("not at all") to 3 ("nearly every day"). Full range is 0-6 with higher scores indicating more anxiety. Symptoms of anxiety refer to a cutpoint of 3+ on the GAD-2.

Outcome measures

Outcome measures
Measure
Multicomponent Intervention
n=63 Participants
1.) A one-page paper-pencil agenda setting checklist completed immediately before a regularly scheduled medical oncology visit to elicit and align patient and companion perspectives regarding issues to discuss with the provider, and to stimulate discussion about the role of the companion in the visit, 2.) facilitated registration for the patient portal (for patient and family member, as desired by the patient), and 3.) education (as relevant) on access to doctor's electronic visit notes.
Usual Care
n=55 Participants
Care as usual with the medical oncologist.
Between-group Differences in Care Partner Anxiety at 9-months
Symptoms of Anxiety at 9-Months
8 Participants
10 Participants
Between-group Differences in Care Partner Anxiety at 9-months
No Symptoms of Anxiety at 9-Months
55 Participants
45 Participants

SECONDARY outcome

Timeframe: 9 months

Population: The analysis sample includes the 118 patient-care-partner dyads with complete assessments at 9-months.

Outcome was measured using the Quality of Communication (QC) Scale, a validated 10-item instrument to assess quality of communication between the participant and the medical oncology team. The scale for each item is from 0 ('Worst you can imagine') to 10 ('Best you can imagine'). Full range is 0-100 with higher scores indicating higher perceived quality of communication.

Outcome measures

Outcome measures
Measure
Multicomponent Intervention
n=63 Participants
1.) A one-page paper-pencil agenda setting checklist completed immediately before a regularly scheduled medical oncology visit to elicit and align patient and companion perspectives regarding issues to discuss with the provider, and to stimulate discussion about the role of the companion in the visit, 2.) facilitated registration for the patient portal (for patient and family member, as desired by the patient), and 3.) education (as relevant) on access to doctor's electronic visit notes.
Usual Care
n=55 Participants
Care as usual with the medical oncologist.
Between-group Differences in Patient Quality of Communication at 9-months
89.8 units on a scale
Standard Deviation 11.6
88.0 units on a scale
Standard Deviation 18.7

SECONDARY outcome

Timeframe: 9 months

Population: The analysis sample includes the 118 patient-care-partner dyads with complete assessments at 9-months.

Outcome was measured using the Quality of Communication (QC) Scale, a validated 10-item instrument to assess quality of communication between the participant and the medical oncology team. The scale for each item is from 0 ('Worst you can imagine') to 10 ('Best you can imagine'). Full range is 0-100 with higher scores indicating higher perceived quality of communication.

Outcome measures

Outcome measures
Measure
Multicomponent Intervention
n=63 Participants
1.) A one-page paper-pencil agenda setting checklist completed immediately before a regularly scheduled medical oncology visit to elicit and align patient and companion perspectives regarding issues to discuss with the provider, and to stimulate discussion about the role of the companion in the visit, 2.) facilitated registration for the patient portal (for patient and family member, as desired by the patient), and 3.) education (as relevant) on access to doctor's electronic visit notes.
Usual Care
n=55 Participants
Care as usual with the medical oncologist.
Between-group Differences in Care Partner Quality of Communication at 9-months
90.3 units on a scale
Standard Deviation 10.3
86.2 units on a scale
Standard Deviation 15.9

POST_HOC outcome

Timeframe: 9 months

Population: The analysis sample includes the 118 patient-care-partner dyads with complete assessments at 9-months.

Care partner registration for shared access to the patient portal was assessed at baseline and nine-months post-enrollment.

Outcome measures

Outcome measures
Measure
Multicomponent Intervention
n=63 Participants
1.) A one-page paper-pencil agenda setting checklist completed immediately before a regularly scheduled medical oncology visit to elicit and align patient and companion perspectives regarding issues to discuss with the provider, and to stimulate discussion about the role of the companion in the visit, 2.) facilitated registration for the patient portal (for patient and family member, as desired by the patient), and 3.) education (as relevant) on access to doctor's electronic visit notes.
Usual Care
n=55 Participants
Care as usual with the medical oncologist.
Between-group Differences in Care Partner Registration for Shared Access to the Patient Portal at 9-months
Care Partner Registered by 9 Months
49 Participants
1 Participants
Between-group Differences in Care Partner Registration for Shared Access to the Patient Portal at 9-months
Care Partner Did Not Register by 9 Months
14 Participants
54 Participants

POST_HOC outcome

Timeframe: 9 months

Population: The analysis sample includes the patients who used a patient portal feature at least once during 9 month follow up period.

Patient portal use was assessed from date and time-stamped interactions reflecting the frequency, timing, and type of patient portal interactions.Use of the patient portal refers to interactions between enrollment and up to 40-weeks post-enrollment.

Outcome measures

Outcome measures
Measure
Multicomponent Intervention
n=60 Participants
1.) A one-page paper-pencil agenda setting checklist completed immediately before a regularly scheduled medical oncology visit to elicit and align patient and companion perspectives regarding issues to discuss with the provider, and to stimulate discussion about the role of the companion in the visit, 2.) facilitated registration for the patient portal (for patient and family member, as desired by the patient), and 3.) education (as relevant) on access to doctor's electronic visit notes.
Usual Care
n=50 Participants
Care as usual with the medical oncologist.
Between-group Differences in Patient Views of Clinical Visit Notes in the Patient Portal at 9-months
Patient Viewed a Clinical Visit Note by 9-months
38 Participants
18 Participants
Between-group Differences in Patient Views of Clinical Visit Notes in the Patient Portal at 9-months
Patient Did Not View a Clinical Visit Note by 9-months
22 Participants
32 Participants

POST_HOC outcome

Timeframe: 9 months

Population: The analysis sample includes the care partners who logged in to the patient portal at least once during 9 month follow up period.

Patient portal use was assessed from date and time-stamped interactions reflecting the frequency, timing, and type of patient portal interactions. Use of the patient portal refers to interactions between enrollment and up to 40-weeks post-enrollment.

Outcome measures

Outcome measures
Measure
Multicomponent Intervention
n=49 Participants
1.) A one-page paper-pencil agenda setting checklist completed immediately before a regularly scheduled medical oncology visit to elicit and align patient and companion perspectives regarding issues to discuss with the provider, and to stimulate discussion about the role of the companion in the visit, 2.) facilitated registration for the patient portal (for patient and family member, as desired by the patient), and 3.) education (as relevant) on access to doctor's electronic visit notes.
Usual Care
n=1 Participants
Care as usual with the medical oncologist.
Between-group Differences in Care Partner Views of Clinical Visit Notes in the Patient Portal at 9-months
Care Partner Viewed a Clinical Visit Note by 9-months
30 Participants
0 Participants
Between-group Differences in Care Partner Views of Clinical Visit Notes in the Patient Portal at 9-months
Care Partner Did Not View a Clinical Visit Note by 9-months
19 Participants
1 Participants

POST_HOC outcome

Timeframe: 9 months

Population: The analysis sample includes the patients who logged in to the patient portal at least once during 9 month follow up period.

Patient portal use was assessed from date and time-stamped interactions reflecting the frequency, timing, and type of patient portal interactions. Use of the patient portal refers to interactions between enrollment and up to 40-weeks post-enrollment.

Outcome measures

Outcome measures
Measure
Multicomponent Intervention
n=60 Participants
1.) A one-page paper-pencil agenda setting checklist completed immediately before a regularly scheduled medical oncology visit to elicit and align patient and companion perspectives regarding issues to discuss with the provider, and to stimulate discussion about the role of the companion in the visit, 2.) facilitated registration for the patient portal (for patient and family member, as desired by the patient), and 3.) education (as relevant) on access to doctor's electronic visit notes.
Usual Care
n=50 Participants
Care as usual with the medical oncologist.
Between-group Differences in Patient Exchange of Direct Messages in the Patient Portal at 9-months
Patient Exchanged a Direct Message by 9-months
52 Participants
38 Participants
Between-group Differences in Patient Exchange of Direct Messages in the Patient Portal at 9-months
Patient Did Not Exchange a Direct Message by 9-months
8 Participants
12 Participants

POST_HOC outcome

Timeframe: 9 months

Population: The analysis sample includes the care partners who logged in to the patient portal at least once during 9 month follow up period.

Patient portal use was assessed from date and time-stamped interactions reflecting the frequency, timing, and type of patient portal interactions. Use of the patient portal refers to interactions between enrollment and up to 40-weeks post-enrollment.

Outcome measures

Outcome measures
Measure
Multicomponent Intervention
n=49 Participants
1.) A one-page paper-pencil agenda setting checklist completed immediately before a regularly scheduled medical oncology visit to elicit and align patient and companion perspectives regarding issues to discuss with the provider, and to stimulate discussion about the role of the companion in the visit, 2.) facilitated registration for the patient portal (for patient and family member, as desired by the patient), and 3.) education (as relevant) on access to doctor's electronic visit notes.
Usual Care
n=1 Participants
Care as usual with the medical oncologist.
Between-group Differences in Care Partner Exchange of Direct Messages in the Patient Portal at 9-months
Care Partner Exchanged a Direct Message by 9-months
3 Participants
0 Participants
Between-group Differences in Care Partner Exchange of Direct Messages in the Patient Portal at 9-months
Care Partner Did Not Exchange a Direct Message by 9-months
46 Participants
1 Participants

Adverse Events

Multicomponent Intervention

Serious events: 0 serious events
Other events: 0 other events
Deaths: 5 deaths

Usual Care

Serious events: 0 serious events
Other events: 0 other events
Deaths: 10 deaths

Serious adverse events

Adverse event data not reported

Other adverse events

Adverse event data not reported

Additional Information

Research Program Manager

Johns Hopkins University

Phone: 410-614-7910

Results disclosure agreements

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