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

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.

METHODS

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.

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.