Supplemental Digital Content 1
Item wording used in original PeRBA testing (pre-enrollment) and the current study’s testing (post-enrollment)
Participant and Family Member Versions
Item Pre-enrollment Post-enrollment Category
Frequency I feel that this study’s visits might be too frequent.
I feel that study visits are too frequent.
Logistical
Visit Time I feel that this study’s visits might last too long.
I feel that study visits are too long.
Logistical
Family and Friend Time
I feel that participating in this study might take too much time away from my friends and family.
I feel that study visits take away from time with my friends and family.
Logistical
Questions I feel that the
researchers might ask me too many
questions.
I feel that researchers ask me too many questions.
Psychological
Personal Questions I feel that the
researchers might ask me questions that are too personal.
I feel that researchers ask me questions that are too personal.
Psychological
Contact I feel that the
researchers might call or contact me or my family members too often.
I feel that researchers call or contact me too often.
Psychological
Privacy I feel that my personal information might not be kept private.
I worry my personal information might not be kept private.
Psychological
Distance I feel that the research site might be too far away.
I feel that the research site is too far away.
Logistical
Inconvenient I feel that it might be inconvenient to get to the research center.
I feel that it is
inconvenient to get to the research site.
Logistical
Parking I feel that it might be I feel that it is Logistical
inconvenient to park at the research site.
inconvenient to park at the research site.
Emotional I feel that I may become emotionally upset by the research procedure(s).
I feel that I became emotionally upset by the study procedures.
Psychological
Harmful Procedures I feel that I may be physically harmed by the research procedures or study intervention.
I worry that I may be harmed by some of the research procedures.
Physical
Second Thoughts I feel that I may have second thoughts about my decision to
participate in this study.
I have had second thoughts about my decision to participate in the study.
Psychological
Regret I feel that I may regret my decision to
participate in this study.
I regret my decision to participate in this study.
Psychological
Chores Time I feel that this study might take too much time away from my chores and household responsibilities.
I feel that this study takes too much time away from my chores and household
responsibilities.
Logistical
Family Time I feel that this study might take too much time away from my or my family member’s job.
I feel that this study takes too much time away from my or my family member’s job.
Logistical
Transportation Cost I feel that it might cost too much to transport myself (or get) to the research center.
I feel that it costs too much to get to the research center.
Logistical
Fatigue I feel that I might become fatigued from the research procedures or study intervention.
I became fatigued from the research
procedures.
Physical
Side Effects I feel that I might experience side effects from the research procedures or study
I experienced side effects from the research procedures.
Physical
intervention.
Physical Pain I feel that I may experience physical pain or discomfort from participating in this study.
I experienced physical pain or discomfort while participating in this study.
Physical
Health I feel that my heath
might get worse while I’m participating in this study.
I feel that my health got worse while participating in this study.
Physical
Family Member Version Only
Item name Pre-enrollment Post-enrollment Category Family Questions I feel that researchers
might ask my family member or friend too many questions.
I feel that researchers ask my family member or friend too many questions.
Psychological
Personal Family Questions
I feel that researchers might ask my family member or friend questions that are too personal.
I feel that researchers ask my family member or friend questions that are too personal.
Psychological
Persuade I feel that I might have to persuade or coax my family member or friend to come to the research center.
I feel that I had to persuade or coax my family member or friend to come to the research center.
Psychological
Cooperate I feel that I might have to persuade or coax my family member or friend to cooperate with certain aspects of the research study.
I feel that I had to persuade or coax my family member or friend to cooperate with certain aspects of the research study.
Psychological
Note. PeRBA= Perceived Research Burden Assessment (Lingler et al., 2014). Response choices for all items include strongly disagree, disagree, neutral, agree, and strongly agree.
