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CompletedNCT03416907Updated Jan 31, 2018

Informed Consent Formats by Information Preference and Priority

An interventional study of Original consent form and Shortened consent form in Consent Forms and Asthma, sponsored by Carnegie Mellon University. Completed at 1 site in United States. Open to participants aged 18 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2018-01-31.

Sponsored by Carnegie Mellon University · Not applicable, Interventional, and Basic science

Phase
Not applicable
Study type
Interventional
Enrollment
500
Allocation
Randomized
Ages
18 Years and older
Sex
All
01

Study summary

This study will test whether different formats of medical informed consent documents can help improve understanding and confidence in decision-making for clinical trials. The study will be primarily run through an online survey.

Read the detailed description

The goal of this study is to investigate whether the same information can be communicated in different formats of an informed consent document in ways that improve participant understanding and confidence. Participants will review one of several different versions of the same informed consent document, and will be asked to complete a survey after reading the documents. The survey will ask participants their willingness to enroll in the clinical trial discussed in the document and their confidence in their decision. The survey will also test participants recollection of information from the informed consent document. Researchers will look at this data to see if there are ways to improve knowledge about the clinical trial and confidence in decisions without necessarily changing enrollment preferences.

02

Conditions studied

  • Consent Forms
  • Asthma

Keywords

  • Informed consent
03

Who can participate

Ages eligible
18 Years and older
Sexes eligible
All
Accepts healthy volunteers
Yes

Inclusion criteria

  • 18 Years Old or Older
  • Read and agreed to informed consent
  • Indicated desire to participate
  • Diagnosed with asthma
  • US resident

Exclusion criteria

Exclusion Criteria:

  • Participants from whom we receive multiple responses will be dropped from analysis (but will be compensated for participation)
04

Study design

Phase
Not applicable
Primary purpose
Basic science
Allocation
Randomized
Intervention model
Parallel assignment
Masking
Single (Participant)
Enrollment
500 participants (actual)

Study arms

  • Active comparator
    Original

    Participants will review the full-length, original consent form for the clinical trial.

    Behavioral: Original consent form

  • Experimental
    Shortened

    Participants will review a shortened consent form for the clinical trial, which includes only material indicated as important by 2/3 of participants from a previous study.

    Behavioral: Shortened consent form

  • Experimental
    Reordered

    Participants will review a reordered, shortened consent form. This form is based on the shortened consent form, but the sections are reordered based on a previous study, such that sentences previously rated as more likely to impact a participant's decision is more likely to be presented first (except for an initial introductory section).

    Behavioral: Reordered, shortened consent form

  • Experimental
    Highlighted

    Participants will review a shortened consent form with a highlights box, where the highlights box includes the 10 sentences rates as most likely to impact a participant's decision from a previous study.

    Behavioral: Shortened consent form with a highlights box

  • Experimental
    Interactive

    Participants will review an interactive, shortened consent form, where hyperlinks to different sections of the consent form are provided. The landing page includes the introductory section.

    Behavioral: Interactive, shortened consent form

Interventions

  • BehavioralOriginal consent form

    Participants will review the full-length, original consent form for the clinical trial.

  • BehavioralShortened consent form

    Participants will review a shortened consent form for the clinical trial, which includes only material indicated as important by 2/3 of participants from a previous study.

  • BehavioralReordered, shortened consent form

    Participants will review a reordered, shortened consent form. This form is based on the shortened consent form, but the sections are reordered based on a previous study, such that sentences previously rated as more likely to impact a participant's decision is more likely to be presented first (except for an initial introductory section).

  • BehavioralShortened consent form with a highlights box

    Participants will review a shortened consent form with a highlights box, where the highlights box includes the 10 sentences rates as most likely to impact a participant's decision from a previous study.

  • BehavioralInteractive, shortened consent form

    Participants will review an interactive, shortened consent form, where hyperlinks to different sections of the consent form are provided. The landing page includes the introductory section.

05

What researchers measure

Primary outcomes

  1. Score for high impact questions

    Sum of correct answers (T/F) for any item relating to material that was rated as 50 or higher on impact on willingness to enroll in a previous study.

    Time frame: through study completion, an average of 30 minutes

Secondary outcomes

  1. Score for low impact questions

    Sum of correct answers (T/F) for any item relating to material that was rated as 49 or lower on impact on willingness to enroll in a previous study.

    Time frame: through study completion, an average of 30 minutes

  2. Total score for all questions

    Sum of correct answers (T/F) on full knowledge test.

    Time frame: through study completion, an average of 30 minutes

  3. Interaction effect of format and importance on likelihood of correct answer

    Interaction effect in a logistic regression predicting a correct answer, based on the format of the consent form and the importance of the answer.

    Time frame: through study completion, an average of 30 minutes

  4. Scores for different information categories

    Sum of correct answers (T/F) for each of the 20 information categories

    Time frame: through study completion, an average of 30 minutes

  5. Effect of location on score

    Logistic regression coefficient of likelihood of predicting a correct answer, based upon the location on which the sentence appeared--uses only the shortened, and the reordered conditions. Note that sentences appearing in the introduction (which is the first section of all treatments) must be dropped, as there will be no variation in location.

    Time frame: through study completion, an average of 30 minutes

  6. Decision to enroll

    Likert measure of participants hypothetical decision to enroll in the study

    Time frame: through study completion, an average of 30 minutes

  7. Confidence in enrollment decision

    Likert measure of participants confidence in hypothetical decision to enroll in the study

    Time frame: through study completion, an average of 30 minutes

  8. Satisfaction with consent structure

    Likert measure of participants satisfaction with the consent form

    Time frame: through study completion, an average of 30 minutes

  9. Perception of investigator concern for well being

    Likert measure of participants belief in the investigator's concerns for the participant's well-being

    Time frame: through study completion, an average of 30 minutes

  10. Perception of investigator transparency

    Likert measure of participants belief that the investigator is trying to communicate information about the trial accurately

    Time frame: through study completion, an average of 30 minutes

  11. Participant's probability estimate of the likelihood that the treatment would help control their asthma

    Survey question of the following form: 'If you enrolled in the trial described in the consent form, what is the probability that the treatment could help control your asthma better, where 0% means "no chance at all of helping" and 100% means "would definitely help"?' Participants provided with drop-down menu including values from 0% to 100% in increments of 1%.

    Time frame: through study completion, an average of 30 minutes

Other outcomes

  1. Participant's free-response text describing what was learned from reading the informed consent document

    Survey question of the following form: "What are some of the key things you learned from reading the informed consent document?" Participants are then provided with an free-response text box where they are allowed to enter whatever text they want, as long as they enter some text. These responses will be coded by two independent coders, blinded to the treatment arms, using an emergent coding system to identify different topics that participants may raise.

    Time frame: through study completion, an average of 30 minutes

06

Study locations

1 site
  • Carnegie Mellon University
    Pittsburgh, Pennsylvania 15213, United States
07

References and documents

Individual participant data

Plan to share: Undecided — Intend to share deidentified participant data, but we want to review the received data to ensure that there is no information that could potentially reveal individual identity that we may not initially anticipate. As such, a clear delineation of what data will be disclosed is not yet available.

No publications or documents are linked to this record.

08

Registry details

Key details

Study ID
NCT03416907
Lead sponsor
Carnegie Mellon University
Collaborators
ICON plc
Responsible party
Sponsor
First posted
Jan 31, 2018
Start date
Nov 27, 2017
Primary completion
Dec 31, 2017
Completion
Dec 31, 2017
Last update
Jan 31, 2018

Oversight

Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
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