To evaluate diagnostic disparities in Parkinson’s disease (PD) through recruitment of underrepresented minorities into a PD screening study.

Prior studies have revealed a delay in diagnosis and poorer outcomes in African American patients with Parkinson’s disease when compared to their White counterparts. Analysis of the movement disorders database at Boston Medical Center, a tertiary urban hospital and largest safety net hospital in the New England area, identified less African-American patients followed in the clinic compared to date from general population studies of prevalence of PD among difference races. The expected case ratio for African-Americans should be approximately 63%, but the actual case ratio was found to be 6%. This correlates to African-Americans being five times less likely than Whites to be evaluated at a hospital that serves the largest proportion of under-represented minorities in the area. We therefore set out to understand the biases behind referral practices for underrepresented minorities.

We aim to recruit patients through a pre-screening questionnaire. All patients enrolled in the study were scheduled to undergo a Unified Parkinson's Disease Rating Scales (motor part 3) examination. If the patient did not have a known history of Parkinson's disease and had a UPDRS with findings suggestive of Parkinsonism, their PCP was contacted to inform them of the results and to request a referral to the movement disorders clinic at BMC.

This is an on-going study with more than 200 patients screened, over 100 who meet criteria to undergo the study, but only a few participants receiving the UPDRS motor 3 testing with subsequent follow-up.

In developing a study designed to capture patients who historically are under-referred for Parkinson’s disease evaluation, we encountered unanticipated recruitment difficulties. Even with a carefully planned study design that sought to address known recruitment challenges (such as poor follow up, time and resource limitations, and fear of research) we continue to have a low rate of study completion. Proposed interventions to increase recruitment include a Parkinson’s disease fact sheet to inform patients of how participation may impact their health, providers meeting patients at already scheduled appointments to perform UPDRS, and modest compensation.