Table 2.

Burdens for Study Partners

Inconvenience & time commitment Length of study visits Frequency of study visits Waiting & delays during study visits

Travel to study visits Travel time from home to site Traffic / driving condition Travel expenses

Study partner emotional distress Distressed by study questions Distressed by learning of illness progression Distressed by being at study site Distressed by participant’s difficulties Stressed by adhering to protocol Disappointment in outcomes

Primary participant-related burdens Struggles with pill-taking Struggles to get to study visits Coping in new environments

Aspects of the study site Navigating the system Multiple sites for study procedures Environmental factors Billing mistakes

Managing research logistics Monitoring medications Scheduling study visits Adhering to protocol tasks