Sana Aslam1, Amy Amara1, Emily Forbes1, Michelle Fullard1, Samantha Holden1
1University of Colorado Anschutz Medical Center
Objective:
Characterize subspecialty referral patterns for advanced Parkinson’s disease (PD) by demographics.
Background:
Only 9% of patients with advanced PD receive subspecialty care despite evidence that such care improves outcomes. Limited understanding of referral pathways may contribute to underutilization of subspecialty care, representing a critical gap in equitable access to effective therapies.
Design/Methods:
Retrospective cohort study of patients with advanced PD, defined as ICD-10 diagnoses of PD with fluctuations and/or dyskinesia (G20.A2, B1 and B2), in a large health network, between 2020 and 2024. Referrals to the affiliated academic subspecialty clinic were defined as system-entered referrals to a movement specialist. Referral completion, defined as referred patients with a completed encounter with a movement specialist, was tracked. Demographic and clinical characteristics were compared using t-tests and chi-square tests.
Results:
Among 3,037 patients with advanced PD (mean age 74.1±9.1years, range 36–93; 62.7%male), 690 (22.7%) were referred to subspecialists, of whom 533 (77.2%) completed at least one visit. Patients referred were younger (72.0 vs. 74.7years, p<0.001), partnered (69.7% vs. 64.8%, p=0.044), more likely to reside in urban counties (56.7% vs. 33.4%, p<0.001), and predominantly from outside the system (81.9%, p<0.001). Referral completion was more common among older (72.2 vs. 71.3years, p=0.025), male (64.4% vs. 51.0%, p=0.002), partnered (71.5% vs. 63.1%, p=0.032), and externally referred patients (84.0% vs. 74.5%, p=0.006). Race/ethnicity distributions did not differ significantly in either analysis.
Conclusions:
In one of the largest integrated health systems in the region, only one in five patients with advanced PD were referred to an academic movement disorders center, with most referrals originating externally. Referral gaps may reflect issues in triage between general neurology and specialty clinics, patient reluctance to travel to academic centers, and a “learned helplessness” among referrers who perceive limited access. Future studies should examine these system- and provider-level drivers to inform interventions that improve access.
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