Objective: To understand diagnosis and care experiences of patients and care partners living with progressive supranuclear palsy (PSP), corticobasal syndrome (CBS), and multiple system atrophy (MSA), with the aim of identifying actionable steps to achieve patient-centered best practices.

Background: It takes an average of 2.5 years from symptom onset to receive a clinical diagnosis of PSP, CBS, or MSA [1,2]. Lack of biomarkers, minimal familiarity with atypical parkinsonism among health care providers, and institutional barriers contribute to this delay. With a typical life expectancy of 7-8 years, timely access to diagnosis, care, and resources may alleviate additional burden for patients and families [2-5].

Method: A 12-item survey, which included questions about diagnosis journey and care needs, was disseminated online through the CurePSP database. The results were presented at convenings of the CurePSP Center of Care (CoC) network, 30 specialized medical centers across the U.S. and Canada, in April and December 2022. Over 50 stakeholders from CoC identified priorities for improving delay to diagnosis and specialty care based on key takeaways from this survey and their clinical experiences.

Results: A total of 234 patients and care partners (84.6% PSP, 8.6% CBS, 6.8% MSA) completed the survey. 46% of participants reported an initial diagnosis of Parkinson’s disease. Only 20% of participants reported receiving a PSP, CBS or MSA diagnosis at their initial appointment with a neurologist, with over half being diagnosed beyond 1 year. The leading perceived barrier to receiving comprehensive care was a lack of knowledge and comfort of atypical parkinsonism among health care providers. Second was the lengthy process to diagnosis. Participants who sought care at a CurePSP CoC (n = 21) cited the health care team as their primary source of support in their disease journey. Reliance on educational information on the internet was the primary source of support for non-CoC participants, while family and friends were the second biggest sources of support for both groups.

Conclusion: Reduction of waiting times for an initial appointment with a specialist and education of general neurologists were identified as tangible and critical steps to improve diagnostic delay and access to care. The CurePSP CoC network plans to further study and document barriers to care, as well as best practices for integrated team care for PSP, CBS, and MSA.

References: [1] Mamarabadi M, Razjouyan H, Golbe LI. Is the latency from progressive supranuclear palsy onset to diagnosis improving? Mov Disord Clin Pract. 2018; 5(6): 603-606.
[2] Wenning GK, Litvan I, Jankovic J, et al. Natural history and survival of 14 patients with corticobasal degeneration confirmed at postmortem examination. Journal of Neurology, Neurosurgery & Psychiatry 1998; 64:184-189.
[3] Cosseddu M, Benussi A, Gazzina S, Manes MA, Dell’Era V, Cristillo V, Turrone R, Alberici A, Borroni B. Natural history and predictors of survival in progressive supranuclear palsy. J Neurol Sci. 2017; 382:105-107.
[4] Figueroa JJ, Singer W, Parsaik A, et al. Multiple system atrophy: Prognostic indicators of survival. Mov Disord. 2014; 29(9): 1151-1157.
[5] Respondek G, Breslow D, Amirghiasvand C, et al. The lived experiences of people with progressive supranuclear palsy and their caregivers. Neurol Ther 2023; 12, 229–247.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/identifying-a-path-to-improve-diagnostic-delay-and-access-to-care-for-psp-cbs-and-msa/