Objective: To explore the feasibility and satisfaction of a therapeutic education program (TEP) in progressive supranuclear palsy (PSP).

Background: PSP is a rare tauopathy with treatment limited to symptomatic strategies with modest benefit. Therapeutic education programs (TEP) are an interdisciplinary approach to teach and instruct patients with chronic conditions and their caregivers about their illness and strategies and tricks to cope with common symptoms and complications. TEP have been introduced in conditions such as diabetes and then applied to different chronicities, including Parkinson’s disease, without evidence in PSP. Here we present a TEP-PSP program.

Method: As part of an ongoing registry of PSP patients in the Barcelona province of Catalonia, Spain (5,500,000 inhabitants and 14 participating university and local hospitals), we have designed a study where 5 groups of 5 dyads (with each dyad consisting of a patient and their main caregiver) enter to the program. The program comprises 5 sessions covering general knowledge of the disease, nurse care, speech and physical therapy, and occupational, psychology and social support.  Here we present preliminary baseline results of demographical, clinical, quality of life, and Likert satisfaction score for each of the educative sessions of the first three groups (that is, 30 participants by means of 15 patients and their 15 main caregivers).

Results: To date we have enrolled 9 male and 6 female PSP patients along with their spouses or other next-of-kin. Median age was 69 years (IQR=62-64), median disease duration 6 years (IQR=4-8), median PSP clinical deficits scale (PSP-CDS) score was 9 (IQR=6-12), median EQ5L analogical scale (measuring quality of life) was 60 (IQR=50-86), and the Zarit caregiver burden scale score was 33 (IQR=16-44; cut-off 48). The median global satisfaction scale for each of the sessions was 3 (satisfactory) (IQR=3-4) for the introductory session and 4 (very satisfactory) (IQR=3-4) for the other 4 sessions (speech and physical therapy, nurse care and psychological, occupational and social work).

Conclusion: A therapeutic education program in PSP is feasible, with overall high satisfaction after the sessions. The burden of disease reflected by quality of life and Zarit scales is high, as expected. Work is ongoing to complete recruitment and complete the longitudinal follow-up after the program.

[Funded by Fundació La Marató de TV3.]

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MDS Abstracts - https://www.mdsabstracts.org/abstract/tep-psp-preliminary-results-of-a-therapeutic-education-program-in-progressive-supranuclear-palsy/