Territorial Implementation and Evaluation of a Multiple Sclerosis Expert Patient Program

Summary

Introduction: Multiple sclerosis (MS) affects about 50,000 people in Spain, so it is essential to implement health interventions that meet their needs and demands. Expert patient programs facilitate health-related empowerment through peer learning. From a study of focus groups that identified the characteristics and contents of an expert patient program for MS and the ongoing pilot tests, the need for implementation in the different reference units of Catalonia is established.

Hypothesis: The territorial implementation in Catalonia of a Catalonia® Expert Patient Program for people with MS (PPEC-EM) based on peer learning will improve the quality of life, knowledge and self-management related to the health process of the participants.

Objective: To deploy and evaluate the territorial implementation of a PPEC-EM based on peer learning regarding the quality of life, knowledge and self-management related to the health process of the participants.

Methodology: Pre-post intervention multicenter clinical study. This study will begin after the approval of the respective Ethics Committees. The deployment will consist of 12 groups of patients (2 per unit): 6 groups with people with recurrent MS and 6 groups with people with progressive MS. A patient with MS previously trained by a team of health professionals will lead 9 educational group sessions (1 weekly session for 9 weeks) with 12 people with the same disease in order to improve the impact and self-management according to the health process. The main variable is the improvement of the quality of life and the secondary ones are the emotional impact, activation of the person, knowledge on the MS, fatigue, habits and lifestyles, use of the sanitary services and program-related experience of participants. All variables will be measured before and after the intervention and after 6 and 12 months. A pre-post comparability analysis will be developed in relation to the variables studied.

Conditions

• Multiple Sclerosis
• Quality of Life
• Patient Empowerment
• Patient Activation
• Fatigue
• Peer Group

Interventions

OTHER

Multiple Sclerosis Expert Patient Program of Catalonia

It is intended to constitute 12 groups of patients (6 with relapsing and 6 for progressive MS; one of each type per unit). The study will be conducted virtually due to the current pandemic situation. Throughout 9 sessions (1 per week for 9 sessions), participants in the group will share knowledge and lived experiences on all aspects related to MS and their self-management. In each session there is a theoretical part to focus on the topic, conducted by the EP. Immediately afterwards, the EP will encourage interaction, facilitating the expression of doubts, questions or experiences about the contents. Its resolution will be sought among the group, resulting in empowerment and control over the health situation. The knowledge acquired will be based on the information provided by the EP and on the knowledge resulting from the life experiences regarding MS of all the people involved. In all sessions, a healthcare professional will act as an observer, providing help and support to the EP.

Sponsors & Collaborators

• Hospital Universitari Vall d'Hebron Research Institute

  lead OTHER

Principal Investigators

• Miguel Angel Robles Sanchez, RN · Multiple Sclerosis Centre of Catalonia (Cemcat), Vall d'Hebron Barcelona Hospital Campus

Study Design

Allocation

NON_RANDOMIZED

Purpose

SUPPORTIVE_CARE

Masking

NONE

Model

SEQUENTIAL

Eligibility

Min Age

18 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2021-11-01

Primary Completion

2023-12-31

Completion

2024-07-31

Countries

• Spain

Study Locations