Objective: To define interdisciplinary care practices for progressive supranuclear palsy (PSP), corticobasal syndrome (CBS), and multiple system atrophy (MSA).

Background: PSP, CBS, and MSA are complex neurodegenerative disorders with rapidly progressive symptoms and increasing care needs over time. While there is evidence that patients with Parkinson’s disease benefit from coordinated, interdisciplinary care by a team of specialists, studies supporting a similar approach in atypical Parkinsonism are lacking [1-4]. We aimed to characterize the current landscape of interdisciplinary care practices offered by the CurePSP Centers of Care (CoCs), a network of 32 medical centers in the United States and Canada dedicated to providing comprehensive care to patients with PSP, CBS, and MSA.

Method: We collected narrative data describing current interdisciplinary care models offered by CoCs and summarized key similarities and differences in clinic organization, teams, patient volume, and other metrics of interest.

Results: Narratives were completed by representatives from 12 CoCs offering interdisciplinary clinics for atypical Parkinsonism. Of those, 11 offer a synchronous model, where at least 2 specialists see the patient together on the same day. Seven clinics are exclusively for PSP, CBS, or MSA. Specialty services offered in a synchronous manner include social work (10/11), physical therapy (8/11), speech-language pathology (8/11), occupational therapy (6/11), palliative care (4/11), clinical nutrition (4/11), and neuropsychology (2/11). One quarter of sites incorporate movement disorders fellows and / or nurses as part of the care team. Common challenges for CoCs include identifying patients best served by interdisciplinary care and allotting sufficient clinic time for these patients.  All CoCs primarily rely on clinical revenue and a small number receive philanthropic support.

Conclusion: Interdisciplinary care is important in PSP, CBS, and MSA.  Many CurePSP CoCs take an organic approach to provide interdisciplinary care, often incorporating specialties that address the specific needs of patients with PSP, CBS, or MSA. Additional research is needed to determine which disciplines are most desired by this patient population and which are most effective at improving outcomes. Further, best practice guidelines are needed for interdisciplinary care delivery in these diseases.

References: [1] Rajan R, Brenna L, Bloem, BR, Dahodwala N, Gardner J, Goldman JG, Grimes DA Iansek R, Kovács N, McGinley J, Parashos SA, Piemonte MEP, Eggers C. Integrated care in Parkinson’s disease: a systematic review and meta-analysis. Mov Disord 2020; 35: 1509–1531. doi:10.1002/mds.28097

[2] Radder DLM, Nonnekes J, van Nimwegen M, Eggers C, Abbruzzese G, Alves G, Browner N, Chaudhuri KR, Ebersbach G, Ferreira JJ, Fleisher JE, Fletcher P, Frazzitta G, Giladi N, Guttman M, Iansek R, Khandhar S, Klucken J, Lafontaine AL, Marras C, Nutt J, Okun MS, Parashos SA, Munneke M, Bloem BE. Recommendations for the organization of multidisciplinary clinical care teams in Parkinson’s disease. J Parkinsons Dis. 2020; 10: 1087-1098. doi:10.3233/JPD-202078.

[3] Bluett B, Pantelyat AY, Litvan I, Ali F, Apetauerova D, Bega D, Bloom L, Bower J, Boxer AL, Dale ML, Dhall R, Duquette A, Fernandez HH, Fleisher JE, Grossman M, Howell M, Kerwin DR, Leegwater-Kim J, Lepage C, Ljubenkov PA, Mancini M, McFarland NR, Moretti P, Myrick E, Patel P, Plummer LS, Rodriguez-Porcel F, Rojas J, Sidiropoulos C, Sklerov M, Sokol LL, Tuite PJ, VandeVrede L, Wilhelm J, Wills AM, Xie T, Golbe LI. Best practices in the clinical management of progressive supranuclear palsy and corticobasal syndrome: A consensus statement of the CurePSP Centers of Care. Front Neurol. 2021; 12: 694872. doi: 10.3389/fneur.2021.694872

[4] Coon EA, Golden EP, Bryarly M, McGregor T, Nguyen BN, Moutvic MA, Cutsforth-Gregory JK, Stevens PM, Chou CZ, Rhee L, Vernino S. A call for multiple system atrophy centers of excellence. Clin Auton Res 2022; 32(3): 205–208. https://doi.org/10.1007/s10286-022-00866-1

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MDS Abstracts - https://www.mdsabstracts.org/abstract/the-landscape-of-interdisciplinary-care-for-atypical-parkinsonism-a-qualitative-study-from-the-curepsp-centers-of-care/