Participant Experience with Observational Studies of Brain Aging and Alzheimer’s Disease
Amber Ligason-Tiquia1, Maricarmen Pachicano2, Elena Taylor2, Elizabeth Joe2
1WesternU College of Osteopathic Medicine of the Pacific, 2University of Southern California, Keck School of Medicine
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.