Trial Outcomes & Findings for Innovative Approaches for Minor Consent: Consent 2.0 (NCT NCT03242954)

NCT ID: NCT03242954

Last Updated: 2021-04-22

Results Overview

Comparing mean adolescent Willingness to Participate (WTP) scores across the three consent conditions and two trial types. WTP scores are based on the response to the question: "If offered the chance, how likely would you be to participate in the study?" Responses are collected using a Likert scale (definitely not participate, probably not participate, might or might not participate, probably participate, definitely participate) and converted to a numeric score with values ranging from 1 (definitely not participate) to 5 (definitely participate) for analysis.

Recruitment status

COMPLETED

Study phase

NA

Target enrollment

254 participants

Primary outcome timeframe

Day 1

Results posted on

2021-04-22

Participant Flow

1,366 individuals were screened at 4 study sites in the United States (Chicago, Denver, Baltimore, and Tampa) between May 2018 and September 2019. Of those screened, 422 met all eligibility criteria and 254 were randomized, enrolled, and completed the 1-time study visit.

All parent participants are considered one study 'arm' as they were not randomized to just one of the three consent conditions (as the adolescent participants were), but rather were presented with information on all 3 consent conditions and commented on the acceptability of each.

Participant milestones

Participant milestones
Measure
Adolescents: Consent Condition 1
Autonomous consent Autonomous consent: Consent requirement where the participant is not required to get anyone's permission to participate in the trial.
Adolescents: Consent Condition 2
Adult permission required Adult permission required: Consent requirement where the participant is required to obtain an adult's permission to participate in the trial.
Adolescents: Consent Condition 3
Parental permission required Parental Permission Required: Consent requirement where the participant is required to obtain their parent's permission to participate in the trial.
Parents: Consent Conditions 1-3
Autonomous consent, Adult permission required and Parental permission required Autonomous consent: Consent requirement where the participant is not required to get anyone's permission to participate in the trial. Adult permission required: Consent requirement where the participant is required to obtain an adult's permission to participate in the trial. Parental Permission Required: Consent requirement where the participant is required to obtain their parent's permission to participate in the trial.
Overall Study
STARTED
43
45
41
125
Overall Study
COMPLETED
43
45
41
125
Overall Study
NOT COMPLETED
0
0
0
0

Reasons for withdrawal

Withdrawal data not reported

Baseline Characteristics

Gender identity data was not collected on Parent participants.

Baseline characteristics by cohort

Baseline characteristics by cohort
Measure
Adolescents: Consent Condition 1
n=43 Participants
Autonomous minor consent Autonomous minor consent: Consent requirement where the participant is not required to get anyone's permission to participate in the trial.
Adolescents: Consent Condition 2
n=45 Participants
Adult permission required Adult permission required: Consent requirement where the participant is required to obtain an adult's permission to participate in the trial.
Adolescents: Consent Condition 3
n=41 Participants
Parental permission required Parental permission required: Consent requirement where the participant is required to obtain their parent's permission to participate in the trial.
Parents: Consent Conditions 1-3
n=125 Participants
Autonomous minor consent, adult permission required, and parental permission required Autonomous minor consent: Consent requirement where the participant is not required to get anyone's permission to participate in the trial. Adult permission required: Consent requirement where the participant is required to obtain an adult's permission to participate in the trial. Parental permission required: Consent requirement where the participant is required to obtain their parent's permission to participate in the trial.
Total
n=254 Participants
Total of all reporting groups
Age, Customized
14 years old
1 Participants
n=43 Participants
1 Participants
n=45 Participants
0 Participants
n=41 Participants
0 Participants
n=125 Participants
2 Participants
n=254 Participants
Age, Customized
15 years old
7 Participants
n=43 Participants
3 Participants
n=45 Participants
5 Participants
n=41 Participants
0 Participants
n=125 Participants
15 Participants
n=254 Participants
Age, Customized
16 years old
11 Participants
n=43 Participants
8 Participants
n=45 Participants
15 Participants
n=41 Participants
0 Participants
n=125 Participants
34 Participants
n=254 Participants
Age, Customized
17 years old
24 Participants
n=43 Participants
33 Participants
n=45 Participants
21 Participants
n=41 Participants
0 Participants
n=125 Participants
78 Participants
n=254 Participants
Age, Customized
>= 18 years old
0 Participants
n=43 Participants
0 Participants
n=45 Participants
0 Participants
n=41 Participants
125 Participants
n=125 Participants
125 Participants
n=254 Participants
Sex: Female, Male
Female
23 Participants
n=43 Participants
24 Participants
n=45 Participants
22 Participants
n=41 Participants
63 Participants
n=125 Participants
132 Participants
n=254 Participants
Sex: Female, Male
Male
20 Participants
n=43 Participants
21 Participants
n=45 Participants
19 Participants
n=41 Participants
62 Participants
n=125 Participants
122 Participants
n=254 Participants
Ethnicity (NIH/OMB)
Hispanic or Latino
11 Participants
n=43 Participants
11 Participants
n=45 Participants
8 Participants
n=41 Participants
18 Participants
n=125 Participants
48 Participants
n=254 Participants
Ethnicity (NIH/OMB)
Not Hispanic or Latino
30 Participants
n=43 Participants
33 Participants
n=45 Participants
32 Participants
n=41 Participants
103 Participants
n=125 Participants
198 Participants
n=254 Participants
Ethnicity (NIH/OMB)
Unknown or Not Reported
2 Participants
n=43 Participants
1 Participants
n=45 Participants
1 Participants
n=41 Participants
4 Participants
n=125 Participants
8 Participants
n=254 Participants
Race (NIH/OMB)
American Indian or Alaska Native
1 Participants
n=43 Participants
2 Participants
n=45 Participants
0 Participants
n=41 Participants
3 Participants
n=125 Participants
6 Participants
n=254 Participants
Race (NIH/OMB)
Asian
0 Participants
n=43 Participants
0 Participants
n=45 Participants
1 Participants
n=41 Participants
0 Participants
n=125 Participants
1 Participants
n=254 Participants
Race (NIH/OMB)
Native Hawaiian or Other Pacific Islander
2 Participants
n=43 Participants
0 Participants
n=45 Participants
0 Participants
n=41 Participants
0 Participants
n=125 Participants
2 Participants
n=254 Participants
Race (NIH/OMB)
Black or African American
19 Participants
n=43 Participants
27 Participants
n=45 Participants
21 Participants
n=41 Participants
73 Participants
n=125 Participants
140 Participants
n=254 Participants
Race (NIH/OMB)
White
9 Participants
n=43 Participants
7 Participants
n=45 Participants
14 Participants
n=41 Participants
31 Participants
n=125 Participants
61 Participants
n=254 Participants
Race (NIH/OMB)
More than one race
7 Participants
n=43 Participants
6 Participants
n=45 Participants
5 Participants
n=41 Participants
8 Participants
n=125 Participants
26 Participants
n=254 Participants
Race (NIH/OMB)
Unknown or Not Reported
5 Participants
n=43 Participants
3 Participants
n=45 Participants
0 Participants
n=41 Participants
10 Participants
n=125 Participants
18 Participants
n=254 Participants
Gender Identity
Woman
22 Participants
n=43 Participants • Gender identity data was not collected on Parent participants.
24 Participants
n=45 Participants • Gender identity data was not collected on Parent participants.
23 Participants
n=41 Participants • Gender identity data was not collected on Parent participants.
69 Participants
n=129 Participants • Gender identity data was not collected on Parent participants.
Gender Identity
Gender queer or gender non-conforming
0 Participants
n=43 Participants • Gender identity data was not collected on Parent participants.
1 Participants
n=45 Participants • Gender identity data was not collected on Parent participants.
0 Participants
n=41 Participants • Gender identity data was not collected on Parent participants.
1 Participants
n=129 Participants • Gender identity data was not collected on Parent participants.
Gender Identity
Man
15 Participants
n=43 Participants • Gender identity data was not collected on Parent participants.
18 Participants
n=45 Participants • Gender identity data was not collected on Parent participants.
14 Participants
n=41 Participants • Gender identity data was not collected on Parent participants.
47 Participants
n=129 Participants • Gender identity data was not collected on Parent participants.
Gender Identity
Trans woman
3 Participants
n=43 Participants • Gender identity data was not collected on Parent participants.
1 Participants
n=45 Participants • Gender identity data was not collected on Parent participants.
4 Participants
n=41 Participants • Gender identity data was not collected on Parent participants.
8 Participants
n=129 Participants • Gender identity data was not collected on Parent participants.
Gender Identity
Trans man
2 Participants
n=43 Participants • Gender identity data was not collected on Parent participants.
0 Participants
n=45 Participants • Gender identity data was not collected on Parent participants.
0 Participants
n=41 Participants • Gender identity data was not collected on Parent participants.
2 Participants
n=129 Participants • Gender identity data was not collected on Parent participants.
Gender Identity
Other
1 Participants
n=43 Participants • Gender identity data was not collected on Parent participants.
1 Participants
n=45 Participants • Gender identity data was not collected on Parent participants.
0 Participants
n=41 Participants • Gender identity data was not collected on Parent participants.
2 Participants
n=129 Participants • Gender identity data was not collected on Parent participants.
Sexual orientation
Bisexual
11 Participants
n=43 Participants • sexual orientation data was not collected on parent participants
11 Participants
n=45 Participants • sexual orientation data was not collected on parent participants
11 Participants
n=41 Participants • sexual orientation data was not collected on parent participants
33 Participants
n=129 Participants • sexual orientation data was not collected on parent participants
Sexual orientation
Gay, queer, or same gender loving
12 Participants
n=43 Participants • sexual orientation data was not collected on parent participants
15 Participants
n=45 Participants • sexual orientation data was not collected on parent participants
9 Participants
n=41 Participants • sexual orientation data was not collected on parent participants
36 Participants
n=129 Participants • sexual orientation data was not collected on parent participants
Sexual orientation
Straight or heterosexual
18 Participants
n=43 Participants • sexual orientation data was not collected on parent participants
17 Participants
n=45 Participants • sexual orientation data was not collected on parent participants
19 Participants
n=41 Participants • sexual orientation data was not collected on parent participants
54 Participants
n=129 Participants • sexual orientation data was not collected on parent participants
Sexual orientation
Questioning
0 Participants
n=43 Participants • sexual orientation data was not collected on parent participants
1 Participants
n=45 Participants • sexual orientation data was not collected on parent participants
0 Participants
n=41 Participants • sexual orientation data was not collected on parent participants
1 Participants
n=129 Participants • sexual orientation data was not collected on parent participants
Sexual orientation
Other
2 Participants
n=43 Participants • sexual orientation data was not collected on parent participants
1 Participants
n=45 Participants • sexual orientation data was not collected on parent participants
2 Participants
n=41 Participants • sexual orientation data was not collected on parent participants
5 Participants
n=129 Participants • sexual orientation data was not collected on parent participants

PRIMARY outcome

Timeframe: Day 1

Comparing mean adolescent Willingness to Participate (WTP) scores across the three consent conditions and two trial types. WTP scores are based on the response to the question: "If offered the chance, how likely would you be to participate in the study?" Responses are collected using a Likert scale (definitely not participate, probably not participate, might or might not participate, probably participate, definitely participate) and converted to a numeric score with values ranging from 1 (definitely not participate) to 5 (definitely participate) for analysis.

Outcome measures

Outcome measures
Measure
Adolescents: Consent Condition 1
n=43 Participants
Autonomous minor consent Autonomous consent: Consent requirement where the participant is not required to get anyone's permission to participate in the trial.
Adolescents: Consent Condition 2
n=45 Participants
Adult permission required Adult permission required: Consent requirement where the participant is required to obtain an adult's permission to participate in the trial.
Adolescents: Consent Condition 3
n=41 Participants
Parental permission required Parental Permission Required: Consent requirement where the participant is required to obtain their parent's permission to participate in the trial.
Mean Adolescent WTP Scores
3.7 score on a scale
Standard Deviation 0.8
3.7 score on a scale
Standard Deviation 1.2
3.5 score on a scale
Standard Deviation 0.8

PRIMARY outcome

Timeframe: Day 1

Population: All parent participants commented on their Willingness to Support (WTS) each of the three consent conditions (autonomous minor consent, adult permission required, and parental permission required). For this reason, the Number Analyzed in each row of the table equals the total number of parent participants for the study (n=125)

Comparing mean parent Willingness to Support (WTS) scores across the three consent conditions and two trial types. WTS scores are based on the response to the question: "This is an acceptable approach to consent for your teenager's participation in the study." Responses are collected using a Likert scale (strongly disagree, disagree, neither disagree nor agree, agree, strongly agree) and converted to a numeric score with values ranging from 1 (strongly disagree) to 5 (strongly agree) for analysis.

Outcome measures

Outcome measures
Measure
Adolescents: Consent Condition 1
n=125 Participants
Autonomous minor consent Autonomous consent: Consent requirement where the participant is not required to get anyone's permission to participate in the trial.
Adolescents: Consent Condition 2
Adult permission required Adult permission required: Consent requirement where the participant is required to obtain an adult's permission to participate in the trial.
Adolescents: Consent Condition 3
Parental permission required Parental Permission Required: Consent requirement where the participant is required to obtain their parent's permission to participate in the trial.
Mean Parent WTS Scores
Parent Consent Condition 1: Autonomous minor consent
2.6 score on a scale
Standard Deviation 1.5
Mean Parent WTS Scores
Parent Consent Condition 2: Adult permission required
3.1 score on a scale
Standard Deviation 1.5
Mean Parent WTS Scores
Parent Consent Condition 3: Parental permission required
4.4 score on a scale
Standard Deviation 1.0

PRIMARY outcome

Timeframe: Day 1

This data reflects adolescent Willingness to Participate (WTP) scores by study agent/trial type. After review of hypothetical consent documents for 2 study agents in different stages of development and with different methods of delivery (based on real-world studies ATN 113 and HPTN 077), adolescents are asked "If offered the chance, how likely would you be to participate in the study?" Responses are collected using a Likert scale (definitely not participate, probably not participate, might or might not participate, probably participate, definitely participate) and converted to a numeric score with values ranging from 1 (definitely not participate) to 5 (definitely participate) for analysis.

Outcome measures

Outcome measures
Measure
Adolescents: Consent Condition 1
n=43 Participants
Autonomous minor consent Autonomous consent: Consent requirement where the participant is not required to get anyone's permission to participate in the trial.
Adolescents: Consent Condition 2
n=45 Participants
Adult permission required Adult permission required: Consent requirement where the participant is required to obtain an adult's permission to participate in the trial.
Adolescents: Consent Condition 3
n=41 Participants
Parental permission required Parental Permission Required: Consent requirement where the participant is required to obtain their parent's permission to participate in the trial.
Effects of the Study Agent (Stage of Development and Method of Delivery) on High-risk Minor Adolescents' WTP Scores
Study agent 1 - ATN 113
3.6 score on a scale
Standard Deviation 1.1
3.7 score on a scale
Standard Deviation 1.3
3.6 score on a scale
Standard Deviation 0.9
Effects of the Study Agent (Stage of Development and Method of Delivery) on High-risk Minor Adolescents' WTP Scores
Study agent 2 - HPTN 077
3.8 score on a scale
Standard Deviation 0.9
3.8 score on a scale
Standard Deviation 1.2
3.4 score on a scale
Standard Deviation 1.0

PRIMARY outcome

Timeframe: Day 1

Population: All parent participants commented on their Willingness to Support (WTS) each of the three consent conditions for each of the 2 trial types. For this reason, the Number Analyzed in each row of this data table equals the total number of parent participants for the study (n=125) as they all answered WTS for each.

After review of hypothetical consent documents for 2 study agents in different stages of development and with different methods of delivery (based on real-world trials ATN 113 and HPTN 077), parents are presented with vignettes for the 3 different consent conditions (autonomous minor consent, adult permission required, parental permission required) and asked "How acceptable is this approach to research consent?". Responses are collected on a Likert scale (completely unacceptable, unacceptable, neither unacceptable not acceptable, acceptable, completely acceptable) and converted to a numeric score with values ranging from 1 (definitely not acceptable) to 5 (definitely acceptable) for analysis.

Outcome measures

Outcome measures
Measure
Adolescents: Consent Condition 1
n=125 Participants
Autonomous minor consent Autonomous consent: Consent requirement where the participant is not required to get anyone's permission to participate in the trial.
Adolescents: Consent Condition 2
Adult permission required Adult permission required: Consent requirement where the participant is required to obtain an adult's permission to participate in the trial.
Adolescents: Consent Condition 3
Parental permission required Parental Permission Required: Consent requirement where the participant is required to obtain their parent's permission to participate in the trial.
Effects of the Study Agent (Stage of Development and Method of Delivery) on Parents' Acceptability Scores
Parental permission required study agent HPTN 077
4.4 score on a scale
Standard Deviation 1.1
Effects of the Study Agent (Stage of Development and Method of Delivery) on Parents' Acceptability Scores
Autonomous minor consent study agent ATN 113
2.7 score on a scale
Standard Deviation 1.6
Effects of the Study Agent (Stage of Development and Method of Delivery) on Parents' Acceptability Scores
Adult permission required study agent ATN 113
3.1 score on a scale
Standard Deviation 1.6
Effects of the Study Agent (Stage of Development and Method of Delivery) on Parents' Acceptability Scores
Parental permission required study agent ATN 113
4.3 score on a scale
Standard Deviation 1.2
Effects of the Study Agent (Stage of Development and Method of Delivery) on Parents' Acceptability Scores
Autonomous minor consent study agent HPTN 077
2.6 score on a scale
Standard Deviation 1.5
Effects of the Study Agent (Stage of Development and Method of Delivery) on Parents' Acceptability Scores
Adult permission required study agent HPTN 077
3.1 score on a scale
Standard Deviation 1.6

Adverse Events

Adolescents: Consent Condition 1

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

Adolescents: Consent Condition 2

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

Adolescents: Consent Condition 3

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

Parents: Consent Conditions 1-3

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

Serious adverse events

Adverse event data not reported

Other adverse events

Adverse event data not reported

Additional Information

Amy Knopf

Indiana University School of Nursing

Phone: 206-356-9430

Results disclosure agreements

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