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Published on: April 23, 2014
Development and Feasibility of a Mixed Virtual and in-Presence Therapeutic Education Program for Early Multiple
Margherita Fabbri1,2,3, Estelle Harroch1, Eva Camgrand1
1Department of Clinical Pharmacology and Neurosciences, Toulouse Parkinson Expert Centre, Toulouse NeuroToul Center of Excellence in Neurodegeneration (COEN), French NS-Park/F-CRIN Network, University of Toulouse 3, CHU of Toulouse, INSERM, Toulouse, France.
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.
