Development and Feasibility of a Mixed Virtual and in‐Presence Therapeutic Education Program for Early Multiple System Atrophy Patients

Margherita Fabbri, Estelle Harroch, Eva Camgrand, Paulo André Dias Bastos, Wassilios G. Meissner, Marie Christine Llorca, Cecile Travere, Marc Kermorgant, Olivier Rascol, Clémence Leung, Aude Roy, Anne Pavy‐Le‐Traon, Christine Mohara, Charlotte Scotto D'Apollonia, David Bendetowicz, Alexandra Foubert‐Samier, Christine Brefel‐Courbon
Movement Disord Clin Pract. 2025-08-06; :
DOI: 10.1002/mdc3.70283


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https://www.bordeaux-neurocampus.fr/11952

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Background

Multiple system atrophy (MSA) is a relentlessly progressive neurodegenerative disorder with no cure. While therapeutic education programs (TEPs) benefit many chronic conditions, data in MSA are limited.

Objectives

To assess the feasibility and satisfaction of a mixed in‐person/virtual TEP for early‐stage MSA patients and caregivers.MethodsA six‐module, self‐paced TEP was co‐developed over 2 years by MSA healthcare professionals, patients, and education experts. A prospective pilot study enrolled recently diagnosed MSA patients (≤12 months) and caregivers. Primary outcomes were recruitment and retention rates. Secondary outcomes included disease progression (UMSARS I–II), health‐related quality of life (Hr‐QoL), compared to matched controls not enrolled in the TEP and patients’ satisfaction.

Results

Fifteen patient‐caregiver pairs were enrolled. Recruitment and retention rates were 44% and 86%, respectively; 78% of modules were completed (least consulted was disease progression). Disease severity and Hr‐QoL worsened over 12 months, with no significant differences versus controls. Overall, 90% of participants were satisfied or very satisfied.

Conclusions

Our pilot study shows that a mixed TEP for MSA patients and familial caregivers is feasible and able to engage them over time.

Auteurs Bordeaux Neurocampus