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

## TL;DR

A mixed virtual and in-person educational program for early-stage multiple system atrophy patients and caregivers was found to be feasible and well-received.

## Contribution

The study introduces a novel mixed-mode therapeutic education program tailored for early-stage MSA patients and their caregivers.

## Key findings

- The program achieved a 44% recruitment rate and 86% retention rate over 12 months.
- 90% of participants reported being satisfied or very satisfied with the program.
- No significant differences in disease progression or quality of life were observed between TEP participants and controls.

## Abstract

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.

To assess the feasibility and satisfaction of a mixed in‐person/virtual TEP for early‐stage MSA patients and caregivers.

A 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.

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.

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