Trial Outcomes & Findings for HOPE-Genomics Intervention for the Improvement of Cancer Patient Knowledge of Genomics (NCT NCT04905082)

NCT ID: NCT04905082

Last Updated: 2025-12-11

Results Overview

Recall rate refers to the proportion of patients who accurately remembered whether they had undergone genetic testing, as reported in the 10-day follow-up survey. If a patient's response at the 10-day mark was unavailable, their answer from the 3-month survey was used as a substitute. This metric helps assess how well patients retained and understood information about their genetic testing experience shortly after receiving their results.

Recruitment status

ACTIVE_NOT_RECRUITING

Study phase

NA

Target enrollment

465 participants

Primary outcome timeframe

Up to 3 months

Results posted on

2025-12-11

Participant Flow

Participant milestones

Participant milestones
Measure
Arm I (Usual Care)
Patients receive education pamphlet about WES and have their genomics test results returned by their clinician in a typical manner.
Arm II (Genomics Test Results, HOPE-Genomics)
Patients receive their genomics test results both from their clinician and from the HOPE-Genomics tool. Patients then view HOPE-Genomics tool over 15-20 minutes after their results are available.
Arm III (HOPE-Genomics, Genomics Test Results)
Patients view HOPE-Genomics tool (containing educational content) over 15-20 minutes before their sequencing results are available. Patients also receive their genomics test results both from their clinician and from the HOPE-Genomics tool.
Overall Study
STARTED
155
155
155
Overall Study
Pre-test Survey (Approximately 2-3 Days After Baseline)
140
143
142
Overall Study
Ten-day Visit
132
134
129
Overall Study
Three-month Survey
121
122
122
Overall Study
COMPLETED
104
109
105
Overall Study
NOT COMPLETED
51
46
50

Reasons for withdrawal

Withdrawal data not reported

Baseline Characteristics

HOPE-Genomics Intervention for the Improvement of Cancer Patient Knowledge of Genomics

Baseline characteristics by cohort

Baseline characteristics by cohort
Measure
Arm I (Usual Care)
n=155 Participants
Patients receive education pamphlet about WES and have their genomics test results returned by their clinician in a typical manner.
Arm II (Genomics Test Results, HOPE-Genomics)
n=155 Participants
Patients receive their genomics test results both from their clinician and from the HOPE-Genomics tool. Patients then view HOPE-Genomics tool over 15-20 minutes after their results are available.
Arm III (HOPE-Genomics, Genomics Test Results)
n=155 Participants
Patients view HOPE-Genomics tool (containing educational content) over 15-20 minutes before their sequencing results are available. Patients also receive their genomics test results both from their clinician and from the HOPE-Genomics tool.
Total
n=465 Participants
Total of all reporting groups
Race (NIH/OMB)
Native Hawaiian or Other Pacific Islander
0 Participants
n=237 Participants
0 Participants
n=243 Participants
0 Participants
n=480 Participants
0 Participants
n=639 Participants
Sex: Female, Male
Female
112 Participants
n=237 Participants
110 Participants
n=243 Participants
116 Participants
n=480 Participants
338 Participants
n=639 Participants
Sex: Female, Male
Male
43 Participants
n=237 Participants
45 Participants
n=243 Participants
39 Participants
n=480 Participants
127 Participants
n=639 Participants
Race (NIH/OMB)
American Indian or Alaska Native
1 Participants
n=237 Participants
1 Participants
n=243 Participants
3 Participants
n=480 Participants
5 Participants
n=639 Participants
Race (NIH/OMB)
Asian
21 Participants
n=237 Participants
16 Participants
n=243 Participants
19 Participants
n=480 Participants
56 Participants
n=639 Participants
Race (NIH/OMB)
Black or African American
6 Participants
n=237 Participants
5 Participants
n=243 Participants
6 Participants
n=480 Participants
17 Participants
n=639 Participants
Race (NIH/OMB)
White
114 Participants
n=237 Participants
126 Participants
n=243 Participants
117 Participants
n=480 Participants
357 Participants
n=639 Participants
Race (NIH/OMB)
More than one race
11 Participants
n=237 Participants
5 Participants
n=243 Participants
6 Participants
n=480 Participants
22 Participants
n=639 Participants
Race (NIH/OMB)
Unknown or Not Reported
2 Participants
n=237 Participants
2 Participants
n=243 Participants
4 Participants
n=480 Participants
8 Participants
n=639 Participants
Ethnicity (NIH/OMB)
Hispanic or Latino
42 Participants
n=237 Participants
37 Participants
n=243 Participants
36 Participants
n=480 Participants
115 Participants
n=639 Participants
Ethnicity (NIH/OMB)
Not Hispanic or Latino
110 Participants
n=237 Participants
116 Participants
n=243 Participants
118 Participants
n=480 Participants
344 Participants
n=639 Participants
Ethnicity (NIH/OMB)
Unknown or Not Reported
3 Participants
n=237 Participants
2 Participants
n=243 Participants
1 Participants
n=480 Participants
6 Participants
n=639 Participants
Age, Continuous
59 Year
n=237 Participants
61 Year
n=243 Participants
64 Year
n=480 Participants
61 Year
n=639 Participants
Education
Grades 1 through 8
0 Participants
n=237 Participants
1 Participants
n=243 Participants
0 Participants
n=480 Participants
1 Participants
n=639 Participants
Education
Grades 9 through 11
4 Participants
n=237 Participants
0 Participants
n=243 Participants
2 Participants
n=480 Participants
6 Participants
n=639 Participants
Education
Grade 12 or GED
11 Participants
n=237 Participants
10 Participants
n=243 Participants
19 Participants
n=480 Participants
40 Participants
n=639 Participants
Education
College 1 Year to 3 Years (Some College or Technical School)
43 Participants
n=237 Participants
45 Participants
n=243 Participants
43 Participants
n=480 Participants
131 Participants
n=639 Participants
Education
College 4 years or More (College Graduate)
45 Participants
n=237 Participants
48 Participants
n=243 Participants
44 Participants
n=480 Participants
137 Participants
n=639 Participants
Education
Master's Degree
25 Participants
n=237 Participants
29 Participants
n=243 Participants
25 Participants
n=480 Participants
79 Participants
n=639 Participants
Education
Doctoral Degree
13 Participants
n=237 Participants
14 Participants
n=243 Participants
18 Participants
n=480 Participants
45 Participants
n=639 Participants
Education
Unknown or Not Reported
14 Participants
n=237 Participants
8 Participants
n=243 Participants
4 Participants
n=480 Participants
26 Participants
n=639 Participants

PRIMARY outcome

Timeframe: Up to 3 months

Population: For the primary analysis, only patients who responded to the question regarding completion of germline testing in either the 10-day or 3-month survey were included. Therefore, the number of patients analyzed differs from the total number of randomized participants.

Recall rate refers to the proportion of patients who accurately remembered whether they had undergone genetic testing, as reported in the 10-day follow-up survey. If a patient's response at the 10-day mark was unavailable, their answer from the 3-month survey was used as a substitute. This metric helps assess how well patients retained and understood information about their genetic testing experience shortly after receiving their results.

Outcome measures

Outcome measures
Measure
Arm I (Usual Care)
n=132 Participants
Patients receive education pamphlet about WES and have their genomics test results returned by their clinician in a typical manner.
Arm II (Genomics Test Results, HOPE-Genomics) Plus Arm III (HOPE-Genomics, Genomics Test Results)
n=137 Participants
This group pools together Arm II and Arm III patients who have access to genomics test results from the HOPE-Genomics tool.
Arm III (HOPE-Genomics, Genomics Test Results)
n=131 Participants
Patients view HOPE-Genomics tool (containing educational content) over 15-20 minutes before their sequencing results are available. Patients also receive their genomics test results both from their clinician and from the HOPE-Genomics tool.
Recall Rates of Personal Genomic Results
Recalled Germline Testing
89 Participants
82 Participants
83 Participants
Recall Rates of Personal Genomic Results
Not Recalled Germline Testing
43 Participants
55 Participants
48 Participants

SECONDARY outcome

Timeframe: Up to 12-month period after results disclosure

In the primary analysis, we will assess the uptake of contextualized guideline-concordant care taking into account clinically relevant, patient specific circumstances. Will use clinical characteristics from the electronic health record (EHR) to assign each patient to clinical category for which there are discrete National Comprehensive Cancer Network (NCCN) recommendations. Using patient self-reported baseline/T1 and EHR data, following sequencing disclosure, we will create a summary genetically-guided care variable ranging from 0-100%. In the secondary analyses, will define guideline concordant as meeting \>= 75% of recommended guidelines.

Outcome measures

Outcome data not reported

OTHER_PRE_SPECIFIED outcome

Timeframe: 10 days, 3 months, 9 months

Population: Only participants who answered distress-related questions were included in the analysis.

The psychosocial impact of genetic testing and patient uncertainty were assessed at 10 days, 3 months and 9 months using both the adapted PAGIS Certainty Scale and the FACToR. The FACToR was a 12-item measure that included four subscales: privacy concerns, uncertainty, test-related distress, and positive experiences. The overall FACToR score is computed by summing all items after reverse scoring the positivity subscale, resulting in a total range of 0 to 48. Higher total scores indicate greater psychosocial impact, which is considered a worse outcome. The PAGIS Certainty Subscale consists of 6 items scored on a 1-6 scale, with a total range of 6-36. Higher scores reflect greater certainty and better psychological adaptation to genetic information, which is considered a positive outcome.

Outcome measures

Outcome measures
Measure
Arm I (Usual Care)
n=121 Participants
Patients receive education pamphlet about WES and have their genomics test results returned by their clinician in a typical manner.
Arm II (Genomics Test Results, HOPE-Genomics) Plus Arm III (HOPE-Genomics, Genomics Test Results)
n=126 Participants
This group pools together Arm II and Arm III patients who have access to genomics test results from the HOPE-Genomics tool.
Arm III (HOPE-Genomics, Genomics Test Results)
n=120 Participants
Patients view HOPE-Genomics tool (containing educational content) over 15-20 minutes before their sequencing results are available. Patients also receive their genomics test results both from their clinician and from the HOPE-Genomics tool.
Test-related Distress
FACToR Score at 10-Day
11.07 scores on a scale
Standard Deviation 6.29
12.37 scores on a scale
Standard Deviation 6.82
11.17 scores on a scale
Standard Deviation 7.93
Test-related Distress
FACToR Score at 3-Month
12.32 scores on a scale
Standard Deviation 6.83
13.20 scores on a scale
Standard Deviation 7.41
12.48 scores on a scale
Standard Deviation 7.47
Test-related Distress
PAGIS Score at 10 Days
24.76 scores on a scale
Standard Deviation 6.74
24.25 scores on a scale
Standard Deviation 7.11
26.53 scores on a scale
Standard Deviation 6.95
Test-related Distress
PAGIS Score at 3 Months
25.11 scores on a scale
Standard Deviation 7.38
24.54 scores on a scale
Standard Deviation 7.23
26.11 scores on a scale
Standard Deviation 7.30
Test-related Distress
PAGIS Score at 9 Months
22.29 scores on a scale
Standard Deviation 7.12
23.11 scores on a scale
Standard Deviation 7.42
24.39 scores on a scale
Standard Deviation 8.34
Test-related Distress
FACToR Score at 9-Month
12.61 scores on a scale
Standard Deviation 7.11
11.97 scores on a scale
Standard Deviation 6.31
12.19 scores on a scale
Standard Deviation 7.01

OTHER_PRE_SPECIFIED outcome

Timeframe: Up to 9 months

In exploratory analyses related to Aim 2 (i.e. receipt of contextual guideline-concordant care), will also operationalize the secondary outcome in an additional way: Categories of genetically-guided care: Will evaluate patients' receipt of 1) treatment recommended by provider based on sequencing (any/none), 2) patients' sharing of sequencing results with family members (any/none), and 3) patients' consultation with genetic counseling/ recommended specialist (any/none).

Outcome measures

Outcome data not reported

OTHER_PRE_SPECIFIED outcome

Timeframe: Up to 9 months

Will analyze the web-log of user visits (e.g., number of viewing sessions, page views and use of interactive elements).

Outcome measures

Outcome data not reported

OTHER_PRE_SPECIFIED outcome

Timeframe: baseline, pre-test (approximately 2-3 days after baseline), 10 days and 3 months

Population: Only participants who answered at least half of the knowledge questions for corresponding surveys were included in the analysis.

Genomic knowledge was assessed using a modified 35-item instrument comprising three subscales: cancer genomics knowledge, understanding of the use of genetic testing results in cancer care, and germline sequencing knowledge. Overall knowledge scores were calculated for patients who completed more than half of the items in the full measure. Each score was expressed as the percentage of correct responses out of the total number of questions answered in that category, with scores ranging from 0 to 100. The change in pre/post scores was calculated by taking the differences in knowledge scores from baseline to pre-test, 10-days and 3 months survey.

Outcome measures

Outcome measures
Measure
Arm I (Usual Care)
n=139 Participants
Patients receive education pamphlet about WES and have their genomics test results returned by their clinician in a typical manner.
Arm II (Genomics Test Results, HOPE-Genomics) Plus Arm III (HOPE-Genomics, Genomics Test Results)
n=140 Participants
This group pools together Arm II and Arm III patients who have access to genomics test results from the HOPE-Genomics tool.
Arm III (HOPE-Genomics, Genomics Test Results)
n=139 Participants
Patients view HOPE-Genomics tool (containing educational content) over 15-20 minutes before their sequencing results are available. Patients also receive their genomics test results both from their clinician and from the HOPE-Genomics tool.
Change in Genomic Knowledge Score
Change from baseline to pre-test (approximately 2-3 days after baseline)
2.76 Point
Standard Error 14.19
1.67 Point
Standard Error 13.36
7.39 Point
Standard Error 13.88
Change in Genomic Knowledge Score
Change from baseline to 10 days
1.24 Point
Standard Error 16.92
4.86 Point
Standard Error 16.85
7.44 Point
Standard Error 16.95
Change in Genomic Knowledge Score
Change from baseline to 3 months
1.63 Point
Standard Error 17.48
3.12 Point
Standard Error 18.59
6.04 Point
Standard Error 16.32

Adverse Events

Arm I (Usual Care)

Serious events: 0 serious events
Other events: 0 other events
Deaths: 6 deaths

Arm II (Genomics Test Results, HOPE-Genomics)

Serious events: 0 serious events
Other events: 0 other events
Deaths: 8 deaths

Arm III (HOPE-Genomics, Genomics Test Results)

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

Serious adverse events

Adverse event data not reported

Other adverse events

Adverse event data not reported

Additional Information

Stacy W. Gray, MD. AM.

City of Hope

Phone: 626-715-4425

Results disclosure agreements

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