Abstract Details

Title Participant Experience with Observational Studies of Brain Aging and Alzheimer’s Disease

Topic Aging, Dementia, and Behavioral Neurology

Presentation(s) P2 - Poster Session 2 (11:45 AM-12:45 PM)

Poster/Presentation
Number 9-014

Objective To assess the experience of research participants in observational studies of brain aging and Alzheimer’s disease

Background Retaining a diverse cohort of participants for longitudinal studies requires ensuring participants have a positive experience with research. We conducted anonymous surveys of participants in observational research studies through USC’s Alzheimer’s Disease Research Center (ADRC) to assess their overall experience with research and if the informed consent process adequately reflected research procedures.

Design/Methods

3 waves of participant feedback surveys were conducted over a 4 year period. Surveys were mailed to participants enrolled in ongoing observational research studies at USC’s ADRC. Respondents were asked to complete a 34-question survey pertaining to their overall experience with study staff and if their experience of individual research procedures, including MRI, PET, and lumbar puncture, met their expectations as formed by the informed consent process.

Results A total of 222 surveys were analyzed. Respondents rated their experience of all research procedures as in line with their expectations established through the informed consent process, with mean scores on a 6-point Likert scale (from 1 = strongly disagree to 6 = strongly agree) ranging from 4.93 (SD 1.48) for lumbar puncture to 5.49 (SD 0.84) for blood draw. Respondents rated all research procedures as comfortable, ranging from 4.81 (SD 1.51) for lumbar puncture to 5.45 (SD 0.87) for blood draw. 82% of respondents agreed or strongly agreed that they would recommend research participation to a friend.

Conclusions Respondents were generally satisfied with their experience in longitudinal studies of brain aging and Alzheimer’s disease, and overall felt the informed consent process established accurate expectations of study procedures. Understanding the experiences of participants in observational research may help set realistic expectations and improve participant experience and retention.

Authors/Disclosures
Amber Ligason-Tiquia PRESENTER	Ms. Ligason-Tiquia has nothing to disclose.
Maricarmen Pachicano	No disclosure on file
Elena Taylor	No disclosure on file
Elizabeth Joe, MD (University of Southern California, Keck School of Medicine)	The institution of Dr. Joe has received research support from NIH/NIA.

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