Experiences of participant burden in an Alzheimer's disease research center longitudinal cohort

Abstract

Background

Participant attrition can compromise the statistical power and generalizability of research results. Prior investigations have shown that perceptions of higher research burden are positively associated with participant withdrawal from longitudinal studies.

Objective

We measured participants’ perceived burden in a cohort of older adult research participants enrolled in a longitudinal study of memory and aging at the Michigan Alzheimer's Disease Research Center (MADRC).

Methods

Participants completed a modified, 22-item version of the Perceived Research Burden Assessment (PeRBA), which quantitatively measures perceptions of research burden. We performed a multiple linear regression analysis to ascertain the associations between individual participant characteristics (e.g., demographic, clinical, and logistical/socioecological factors) and ratings of perceived research burden.

Results

A total of 300 participants completed the PeRBA. Overall burden was relatively low (mean = 36.6, SD = 9.38), with possible scores ranging from 22–110. Participants who self-identified as Black/African American reported significantly higher levels of perceived research burden relative to participants who self-identified as non-Hispanic White (β = 6.91, p < 0.001). Additionally, participants with a dementia diagnosis endorsed significantly higher levels of burden than their cognitively unimpaired counterparts (β = 4.85, p = 0.03). All other independent variables were not significantly associated with burden appraisal (p > 0.05).

Conclusions

The PeRBA is a useful tool for monitoring participant burden, as well as identifying differential levels of self-reported burden within research cohorts. These findings can inform tailored retention strategies that support the sustained engagement of participants, particularly those who may be the most susceptible to research burden.