Trial Outcomes & Findings for Multimedia Psychoeducation or Print Education in Preparing Cancer Patients for Decision Making About Clinical Trials (NCT NCT02054715)

NCT ID: NCT02054715

Last Updated: 2021-01-27

Results Overview

Preparation for Decision Making Scale (PDMS) is a valid and reliable 10-item self-report measure for which respondents rate the usefulness of materials they were provided in preparing them to communicate with their health care provider and make a health care decision. Each item is scored 1 to 5 where 1=Not at All, 2=A Little, 3=Somewhat, 4=Quite a Bit, 5=A Great Deal. Larger number is better. All 10 scores are summed, then divided by 10; The result - 1 is then multiplied by 25 and we have a range from 0 (less prepared) - 100 (most prepared).

Recruitment status

COMPLETED

Study phase

NA

Target enrollment

418 participants

Primary outcome timeframe

Day 3 to 7

Results posted on

2021-01-27

Participant Flow

Participant milestones

Participant milestones
Measure
Arm I (Print Educational)
Participants undergo a print educational intervention during which they meet with a site coordinator and are instructed to read the NCI booklet titled Taking Part in Cancer Treatment Studies, comprised primarily of information about the nature and conduct of cancer clinical trials. print educational intervention: print educational intervention
Arm II (Multimedia Psychoeducational)
Participants undergo a multimedia psychoeducational intervention during which they meet with a site coordinator and are instructed to view a DVD and read a booklet titled Clinical Trials: Are They Right For You? Participants are encouraged to watch the DVD and read the booklet again at home. multimedia psychoeducational intervention: multimedia psychoeducational intervention
Baseline/Follow-up 1
STARTED
219
199
Baseline/Follow-up 1
COMPLETED
211
192
Baseline/Follow-up 1
NOT COMPLETED
8
7
Follow-up 2
STARTED
211
192
Follow-up 2
COMPLETED
192
173
Follow-up 2
NOT COMPLETED
19
19

Reasons for withdrawal

Reasons for withdrawal
Measure
Arm I (Print Educational)
Participants undergo a print educational intervention during which they meet with a site coordinator and are instructed to read the NCI booklet titled Taking Part in Cancer Treatment Studies, comprised primarily of information about the nature and conduct of cancer clinical trials. print educational intervention: print educational intervention
Arm II (Multimedia Psychoeducational)
Participants undergo a multimedia psychoeducational intervention during which they meet with a site coordinator and are instructed to view a DVD and read a booklet titled Clinical Trials: Are They Right For You? Participants are encouraged to watch the DVD and read the booklet again at home. multimedia psychoeducational intervention: multimedia psychoeducational intervention
Baseline/Follow-up 1
Refused
1
3
Baseline/Follow-up 1
Medical
0
1
Baseline/Follow-up 1
Changed MD/Facility
0
1
Baseline/Follow-up 1
Disliked Procedure
0
1
Baseline/Follow-up 1
No Reason
0
1
Baseline/Follow-up 1
Overwhelmed
2
0
Baseline/Follow-up 1
Ineligible
3
0
Baseline/Follow-up 1
Hospitalization
1
0
Baseline/Follow-up 1
Changed Mind
1
0
Follow-up 2
Lost to Followup
3
1
Follow-up 2
Refused
3
2
Follow-up 2
Followup Not Completed
3
4
Follow-up 2
Ineligible
4
5
Follow-up 2
Death
3
3
Follow-up 2
Hospitalization
0
2
Follow-up 2
Changed MD/Facility
0
1
Follow-up 2
Changed Mind
0
1
Follow-up 2
No Reason
2
0
Follow-up 2
Treatment Change or Delay
1
0

Baseline Characteristics

Multimedia Psychoeducation or Print Education in Preparing Cancer Patients for Decision Making About Clinical Trials

Baseline characteristics by cohort

Baseline characteristics by cohort
Measure
Arm I (Print Educational)
n=219 Participants
Participants undergo a print educational intervention during which they meet with a site coordinator and are instructed to read the NCI booklet titled Taking Part in Cancer Treatment Studies, comprised primarily of information about the nature and conduct of cancer clinical trials. print educational intervention: print educational intervention
Arm II (Multimedia Psychoeducational)
n=199 Participants
Participants undergo a multimedia psychoeducational intervention during which they meet with a site coordinator and are instructed to view a DVD and read a booklet titled Clinical Trials: Are They Right For You? Participants are encouraged to watch the DVD and read the booklet again at home. multimedia psychoeducational intervention: multimedia psychoeducational intervention
Total
n=418 Participants
Total of all reporting groups
Age, Continuous
61.6 years
STANDARD_DEVIATION 11.2 • n=5 Participants
61.5 years
STANDARD_DEVIATION 12.6 • n=7 Participants
61.5 years
STANDARD_DEVIATION 11.9 • n=5 Participants
Sex: Female, Male
Female
134 Participants
n=5 Participants
121 Participants
n=7 Participants
255 Participants
n=5 Participants
Sex: Female, Male
Male
85 Participants
n=5 Participants
78 Participants
n=7 Participants
163 Participants
n=5 Participants
Ethnicity (NIH/OMB)
Hispanic or Latino
3 Participants
n=5 Participants
5 Participants
n=7 Participants
8 Participants
n=5 Participants
Ethnicity (NIH/OMB)
Not Hispanic or Latino
214 Participants
n=5 Participants
192 Participants
n=7 Participants
406 Participants
n=5 Participants
Ethnicity (NIH/OMB)
Unknown or Not Reported
2 Participants
n=5 Participants
2 Participants
n=7 Participants
4 Participants
n=5 Participants
Race (NIH/OMB)
American Indian or Alaska Native
0 Participants
n=5 Participants
0 Participants
n=7 Participants
0 Participants
n=5 Participants
Race (NIH/OMB)
Asian
3 Participants
n=5 Participants
1 Participants
n=7 Participants
4 Participants
n=5 Participants
Race (NIH/OMB)
Native Hawaiian or Other Pacific Islander
1 Participants
n=5 Participants
0 Participants
n=7 Participants
1 Participants
n=5 Participants
Race (NIH/OMB)
Black or African American
18 Participants
n=5 Participants
19 Participants
n=7 Participants
37 Participants
n=5 Participants
Race (NIH/OMB)
White
195 Participants
n=5 Participants
177 Participants
n=7 Participants
372 Participants
n=5 Participants
Race (NIH/OMB)
More than one race
0 Participants
n=5 Participants
0 Participants
n=7 Participants
0 Participants
n=5 Participants
Race (NIH/OMB)
Unknown or Not Reported
2 Participants
n=5 Participants
2 Participants
n=7 Participants
4 Participants
n=5 Participants
Marital Status
Never Married
19 Participants
n=5 Participants
20 Participants
n=7 Participants
39 Participants
n=5 Participants
Marital Status
Currently Married
133 Participants
n=5 Participants
113 Participants
n=7 Participants
246 Participants
n=5 Participants
Marital Status
Separated
9 Participants
n=5 Participants
4 Participants
n=7 Participants
13 Participants
n=5 Participants
Marital Status
Divorced
38 Participants
n=5 Participants
34 Participants
n=7 Participants
72 Participants
n=5 Participants
Marital Status
Widowed
18 Participants
n=5 Participants
28 Participants
n=7 Participants
46 Participants
n=5 Participants
Marital Status
Unknown
2 Participants
n=5 Participants
0 Participants
n=7 Participants
2 Participants
n=5 Participants

PRIMARY outcome

Timeframe: Day 3 to 7

Population: There were 219 (PE) + 199 (MP) = 418 at Baseline. The population for this outcome is 211 (PE) + 192 (MP) = 403 This is defined as follow-up 1 (Day 3-7).

Preparation for Decision Making Scale (PDMS) is a valid and reliable 10-item self-report measure for which respondents rate the usefulness of materials they were provided in preparing them to communicate with their health care provider and make a health care decision. Each item is scored 1 to 5 where 1=Not at All, 2=A Little, 3=Somewhat, 4=Quite a Bit, 5=A Great Deal. Larger number is better. All 10 scores are summed, then divided by 10; The result - 1 is then multiplied by 25 and we have a range from 0 (less prepared) - 100 (most prepared).

Outcome measures

Outcome measures
Measure
Arm I (Print Educational)
n=211 Participants
Participants undergo a print educational intervention during which they meet with a site coordinator and are instructed to read the NCI booklet titled Taking Part in Cancer Treatment Studies, comprised primarily of information about the nature and conduct of cancer clinical trials. print educational intervention: print educational intervention
Arm II (Multimedia Psychoeducational)
n=192 Participants
Participants undergo a multimedia psychoeducational intervention during which they meet with a site coordinator and are instructed to view a DVD and read a booklet titled Clinical Trials: Are They Right For You? Participants are encouraged to watch the DVD and read the booklet again at home. multimedia psychoeducational intervention: multimedia psychoeducational intervention
Preparedness for Decision Making About Clinical Trial Participation, Measured Using Scores From the Preparation for Decision Making Scale
71.3 percentage of PDMS (0 - 100)
Standard Error 1.4
71.2 percentage of PDMS (0 - 100)
Standard Error 1.5

SECONDARY outcome

Timeframe: Day 49-56

Population: The population for this outcome is 192 (PE) + 173 (MP) = 365 This is defined as follow-up 2 (Day 49-56).

The Decision Regret Scale (DRS) is a five-item paper and pencil self-report measure that asks subjects to reflect on a particular decision and then rate each item on a Likert scale from 1 (strongly agree) to 5 (strongly disagree). A mean score for the DRS is calculated by reverse scoring the two negatively phrased items and dividing by five. The mean scores are converted to a score ranging from 0 to 100 by subtracting 1 and multiplying by 25 and higher scores represent increases in the severity of decision regret. Higher scores are worse.

Outcome measures

Outcome measures
Measure
Arm I (Print Educational)
n=192 Participants
Participants undergo a print educational intervention during which they meet with a site coordinator and are instructed to read the NCI booklet titled Taking Part in Cancer Treatment Studies, comprised primarily of information about the nature and conduct of cancer clinical trials. print educational intervention: print educational intervention
Arm II (Multimedia Psychoeducational)
n=173 Participants
Participants undergo a multimedia psychoeducational intervention during which they meet with a site coordinator and are instructed to view a DVD and read a booklet titled Clinical Trials: Are They Right For You? Participants are encouraged to watch the DVD and read the booklet again at home. multimedia psychoeducational intervention: multimedia psychoeducational intervention
The Decision Regret Scale (DRS)
18.1 percentage of DRS (0 - 100)
Standard Error 1.1
18.3 percentage of DRS (0 - 100)
Standard Error 1.1

SECONDARY outcome

Timeframe: Day 49-56

Population: The population for this outcome is 192 (PE) + 173 (MP) = 365 This is defined as follow-up 2 (Day 49-56).

The Decisional Conflict Scale (DCS) is a valid and reliable 16-item self-report measure that assesses the extent to which respondents experience certainty, satisfaction, and confidence following a health care decision. In the present study, it will be keyed to the decision about therapeutic clinical trial participation. Instructions given to respondents include asking them to reflect on the decisions have just made or are about to make and to respond to statements in the DCS using a five-point Likert scale. Responses to each statement are scored from 1 (strongly agree) to 5 (strongly disagree), with negative statements having reverse scoring; thus high scores indicate higher decisional conflict.

Outcome measures

Outcome measures
Measure
Arm I (Print Educational)
n=192 Participants
Participants undergo a print educational intervention during which they meet with a site coordinator and are instructed to read the NCI booklet titled Taking Part in Cancer Treatment Studies, comprised primarily of information about the nature and conduct of cancer clinical trials. print educational intervention: print educational intervention
Arm II (Multimedia Psychoeducational)
n=173 Participants
Participants undergo a multimedia psychoeducational intervention during which they meet with a site coordinator and are instructed to view a DVD and read a booklet titled Clinical Trials: Are They Right For You? Participants are encouraged to watch the DVD and read the booklet again at home. multimedia psychoeducational intervention: multimedia psychoeducational intervention
The Decisional Conflict Scale (DCS)
18.0 Percentage of DCS (0 - 100)
Standard Error 0.9
17.9 Percentage of DCS (0 - 100)
Standard Error 1.1

OTHER_PRE_SPECIFIED outcome

Timeframe: Day 49-56

Population: The population for this outcome is 192 (PE) + 170 (MP) = 362 Note: There were 3 individuals (MP) who did not answer this question. This is defined as follow-up 2 (Day 49-56).

Given the ethical perspective that patients have a right to make autonomous decisions about clinical trial participation, no hypothesis is offered about the effect of intervention assignment on clinical trial participation rates. To conduct the exploratory analysis regarding the effects of intervention assignment on clinical trial participation, data for all patients offered participation in a therapeutic clinical trial will be entered into a 2 (Intervention: MP or PE) x 2 (Clinical Trial Participation: Yes or No/Still Deciding) contingency table and analyzed using either a Fisher exact test or chi-square test as appropriate.

Outcome measures

Outcome measures
Measure
Arm I (Print Educational)
n=192 Participants
Participants undergo a print educational intervention during which they meet with a site coordinator and are instructed to read the NCI booklet titled Taking Part in Cancer Treatment Studies, comprised primarily of information about the nature and conduct of cancer clinical trials. print educational intervention: print educational intervention
Arm II (Multimedia Psychoeducational)
n=170 Participants
Participants undergo a multimedia psychoeducational intervention during which they meet with a site coordinator and are instructed to view a DVD and read a booklet titled Clinical Trials: Are They Right For You? Participants are encouraged to watch the DVD and read the booklet again at home. multimedia psychoeducational intervention: multimedia psychoeducational intervention
To Explore the Effects of Intervention Assignment on Clinical Trial Participation.
Yes
119 Participants
117 Participants
To Explore the Effects of Intervention Assignment on Clinical Trial Participation.
No
69 Participants
42 Participants
To Explore the Effects of Intervention Assignment on Clinical Trial Participation.
Still Deciding
4 Participants
11 Participants

Adverse Events

Arm I (Print Educational)

Serious events: 4 serious events
Other events: 1 other events
Deaths: 3 deaths

Arm II (Multimedia Psychoeducational)

Serious events: 3 serious events
Other events: 0 other events
Deaths: 3 deaths

Serious adverse events

Serious adverse events
Measure
Arm I (Print Educational)
n=219 participants at risk
Participants undergo a print educational intervention during which they meet with a site coordinator and are instructed to read the NCI booklet titled Taking Part in Cancer Treatment Studies, comprised primarily of information about the nature and conduct of cancer clinical trials. print educational intervention: print educational intervention
Arm II (Multimedia Psychoeducational)
n=199 participants at risk
Participants undergo a multimedia psychoeducational intervention during which they meet with a site coordinator and are instructed to view a DVD and read a booklet titled Clinical Trials: Are They Right For You? Participants are encouraged to watch the DVD and read the booklet again at home. multimedia psychoeducational intervention: multimedia psychoeducational intervention
Blood and lymphatic system disorders
Hyponatremia, decreased WBC, post chemo
0.46%
1/219 • Number of events 1
0.00%
0/199
Hepatobiliary disorders
metastatic hepatocellular carcinoma
0.46%
1/219 • Number of events 1
0.00%
0/199
Gastrointestinal disorders
Perirectal abscess, large tumor with post obstructive atelectasis
0.46%
1/219 • Number of events 1
0.00%
0/199
Neoplasms benign, malignant and unspecified (incl cysts and polyps)
Extensive metastatic melanoma (to skeletal system, liver, lungs, adrenal glands, mesentery, heart)
0.46%
1/219 • Number of events 1
0.00%
0/199
Hepatobiliary disorders
Metastatic melanoma to liver/ sepsis
0.00%
0/219
0.50%
1/199 • Number of events 1
Respiratory, thoracic and mediastinal disorders
Stage IV lung cancer with widespread mets
0.00%
0/219
0.50%
1/199 • Number of events 1
General disorders
Death
0.00%
0/219
0.50%
1/199 • Number of events 1

Other adverse events

Other adverse events
Measure
Arm I (Print Educational)
n=219 participants at risk
Participants undergo a print educational intervention during which they meet with a site coordinator and are instructed to read the NCI booklet titled Taking Part in Cancer Treatment Studies, comprised primarily of information about the nature and conduct of cancer clinical trials. print educational intervention: print educational intervention
Arm II (Multimedia Psychoeducational)
n=199 participants at risk
Participants undergo a multimedia psychoeducational intervention during which they meet with a site coordinator and are instructed to view a DVD and read a booklet titled Clinical Trials: Are They Right For You? Participants are encouraged to watch the DVD and read the booklet again at home. multimedia psychoeducational intervention: multimedia psychoeducational intervention
Infections and infestations
Fever post chemo
0.46%
1/219 • Number of events 1
0.00%
0/199

Additional Information

Gary R. Morrow, PhD, MS; Deans Professor of Oncology

University of Rochester Medical Center

Phone: 585-275-9961

Results disclosure agreements

  • Principal investigator is a sponsor employee Data Available: Select individual patient-level data from this trial can be requested from the NCTN/NCORP Data Archive https://nctn-data-archive.nci.nih.gov/
  • Publication restrictions are in place

Restriction type: OTHER