An expert patient program for people living with multiple sclerosis improves knowledge and empowerment: a pre-test,...

Area of Science:

• Neurology
• Patient Education
• Healthcare Management

Background:

• Multiple Sclerosis (MS) presents complex patient needs requiring patient-centered care.
• Expert Patient (EP) programs enhance self-management through peer learning and knowledge transfer.
• A nurse-led EP program was developed for MS patients in Catalonia, Spain.

Purpose of the Study:

• To implement the nurse-led Expert Patient Program of Catalonia™ (EPPC) for individuals with MS.
• To evaluate the program's impact on disease knowledge, patient empowerment, and health indicators.

Main Methods:

• A multicenter, pre-test/post-test interventional study was conducted from January 2021 to December 2023.
• Twelve groups comprising 112 participants with relapsing and progressive MS attended nine virtual sessions led by trained EPs.
• Questionnaires assessed outcomes post-sessions and at 6 and 12 months.

Main Results:

• Significant improvements were observed in MS knowledge, with 9 out of 18 questions answered correctly more often post-intervention.
• Patient Activation Measure-13 scores increased significantly at 12 months in both relapsing and progressive MS groups.
• While medication self-management and diet improved, physical health composite scores decreased, and disability scores increased in progressive MS patients.

Conclusions:

• The nurse-led EPPC was successfully implemented across Catalonia, enhancing MS patient knowledge and activation.
• The program positively influenced medication self-management and dietary habits.
• Despite some negative impacts on quality of life and disability in progressive MS, the program demonstrated value in patient empowerment.