Therapeutic Education for Multiple System Atrophy (MSA) Patients and Their Caregivers (ETP@MS)

Toulouse University Hospital

Status

Enrolling

Conditions

Multiple System Atrophy

Treatments

Other: Therapeutic Education Program (TEP)

Study type

Interventional

Funder types

Other

Identifiers

NCT05819957

2023-A00340-45 (Other Identifier)

RC31/22/0520

Details and patient eligibility

About

Multiple system atrophy (MSA) is a rare neurodegenerative disorder that leads to major disability, forcing patients and caregivers to adapt their environment and lifestyle. Once they receive the diagnosis, patients and caregivers need to understand the symptoms, cope with them, to digest the diagnosis... All these needs are not completely addressed by the current model of care so we created a therapeutic educational program (TEP) program that will last 12 months, involving both patients and caregivers, including a mixed model of in-person visits and continuous on-line activities. Our project aims to target early MSA patients and their caregivers, proposing to test the feasibility (primary objective) of an innovative therapeutic educational program (TEP) for MSA patients.

Full description

The announcement of MSA diagnosis may provoke a shock in patients and their relatives. Educational programs in neurodegenerative diseases, such as Parkinson's disease (PD), offer patients and caregivers structured skills in disease knowledge, expertise, and management. Those programs may result in an improvement of patients' quality of life (QoL), empowering patients and their caregivers to deal with psychosocial challenges. Additionally, it has been shown that educational programs positively impact the perceived health of PD patients without increasing medical costs. There is no educational program for MSA patients. This is the reason why we created the first therapeutic educational program (TEP) for MSA patients and caregivers, including a mix model of in person visits and online classes and virtual activities. Herein, we aim to target early MSA patients (time to diagnosis < 1 year) and their caregivers, proposing to test the feasibility of this TEP. The program will last 12 months, involving both patients and caregivers, including a mixed model of in-person visits (at baseline and 12 months) and continuous on-line activities (learning situations, questionnaires, quizzes, videos, and interactive exercises).

Enrollment

15 estimated patients

Sex

All

Ages

18+ years old

Volunteers

No Healthy Volunteers

Inclusion criteria

Patients who have had a clinically probable diagnosis of MSA within the last 3 years or clinically established within the last year
Presence of a caregiver defined as a spouse, son/daughter or relative who lives with or sees the patient on a regular basis, i.e. at least three times a week.

Exclusion criteria

Patients and/or caregiver unable to give consent
Patients without access to an internet network or without the material means to access the distance learning modules
Patients with a life expectancy of less than one year
Patients with legal guardians, curators, or legal protection
Patients not affiliated to a social security system
Patients in a period of exclusion from another study