Objective: To assess the longitudinal outcome of a structured therapeutic education program to groups of people living with progressive supranuclear palsy PwPSP and their main caregivers.
Background: Misdiagnosis, diagnostic delay, unawareness, and lack of proven specific symptomatic or disease-modifying strategies are critical challenges in PSP. In this context, both care and education to prevent complications are crucial, but there is a paucity of published studies on structured education programs to groups of patients and caregivers affected by PSP.
Method: We included 50 participants from the Barcelona PSP Registry in this longitudinal study: 25 PwPSP and 25 caregivers. The participants underwent a structured program of 5 sessions: Introduction to the disease; Speech and swallowing; Physiotherapy; Nurse Care; Occupational Therapy & Social Work. Several scales were administered at baseline and at 6-month follow-up. We applied non-parametric statistics, with all analyses being two-tailed, and FDR-corrected for multiple comparisons (p-value set at <0.05).
Results: Fifty-four % of participants were female, with age at inclusion 68+/-10 years, disease duration 6+/-3 years. The Likert satisfaction scale (from 0 to 4) was high (median=4) and so were the scores of the total modified Edupark scale for each of the 5 sessions of the program (up to 20 points; median= 19,5 for session 1; median= 20 for sessions 2 to 5; p=0.443). Participants in the program did not experience significant worsening when comparing the change between baseline and 6-month follow-up in IEXPACS (p=0.345), ZBI (p=0.113), EQ-5D (p=0.444) or WHOQOL (p=0.757) scales by Wilcoxon test.
Conclusion: This structured therapeutic education program for groups of PwPSP and caregivers was feasible and satisfactory. The participants did not significantly worsen at 6-month follow-up in terms of experience, caregiver burden, and quality of life. Group education programs might be beneficial in PSP. [Funding: Fundació La Marató de TV3 (grant 202009-10; PI: Dr. Compta.]
To cite this abstract in AMA style:
A. Camara, J. Herrero, M. Carrasco, M. Baixauli, S. Pelaez, C. Torregrossa, I. Quinoa, C. Painous, M. Fernandez, I. Zaro, Y. Compta. The Barcelona PSP Registry Therapeutic Education Program: a Longitudinal Study [abstract]. Mov Disord. 2026; 41 (suppl 1). https://www.mdsabstracts.org/abstract/the-barcelona-psp-registry-therapeutic-education-program-a-longitudinal-study/. Accessed October 1, 2026.« Back to 2026 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/the-barcelona-psp-registry-therapeutic-education-program-a-longitudinal-study/