Abstract

Misdiagnosis and delayed diagnosis are common in PSP/CBD. To inform approaches to reduce diagnostic delay, it is essential to systematically evaluate patient pathways to diagnosis.

Cases with a final diagnosis of PSP (n=28), CBD (n=2), and 30 age-sex matched PD controls, were identified from the Parkinsonism Incidence in North-East Scotland study. Using general practitioner, hospital and research records, referral and diagnostic time intervals from symptom onset to death were recorded.

Comparing PSP/CBD to PD, the median (interquartile range) time intervals from index symptom to first secondary care referral [0.7 (0.01, 2.53) vs 0.02 (0.00, 0.73) years] and review [0.84 (0.18, 2.56) vs 0.13 (0.07,0.88) years], and, first neurologist referral [1.67 (0.70, 4.45) vs 0.12 (0.00, 1.56) years] and review [1.72 (0.88, 4.53) vs 0.23 (0.11, 1.65) years], were significantly longer in PSP/CBD (p=0.001 to 0.031). The average time intervals from index symptom to a parkinsonian syndrome diagnosis [2.26 (0.85, 5.41) vs 0.10 (0.00, 0.90) years], inclusion of the final diagnosis amongst differential diagnoses [3.62 (2.06, 7.21) vs 0.16 (0.00, 1.53) years], and the final diagnosis as primary diagnosis [4.22 (2.28, 7.63) years vs 0.67 (0.10, 3.04) years] were similarly longer in PSP/CBD (p≤0.001).

Referral and diagnostic time intervals are significantly longer in PSP/CBD when compared to PD. Identifying factors that both improve the timing and destination of referral decision-making, and the accuracy and timeliness of diagnosis is necessary.