Education Material for Multiple Sclerosis Patients and Family: Brazilian Ebook

Background: Multiple Sclerosis (MS) is composed of heterogeneous and disabling signs and symptoms. Educational materials are important for building knowledge about the disease, health and quality of life.

Objectives: To analyze and improve the readability and adequacy of patient and family education materials from the Brazilian Multiple Sclerosis Association.

Methods: Thirteen original educational materials in flyers format written over the institution’s 37 years were first reviewed by a neurologist. Three MS experts then compared the original and revised materials using the Suitability Assessment of Materials (SAM) instrument, a grading scale used to evaluate suitability of health information materials for patients. The SAM criteria were each given 0, 1, or 2 points based on adequacy of the materials to address each criterion, with 0 indicating a “not suitable” rating, 1 indicating an “adequate” rating, and 2 indicating a “superior” rating. The total SAM score for each flyer was calculated as the sum of earned points divided by the number of possible points. The final SAM score was reported as a percentage, with 70-100 % indicating superior material, 40-69 % adequate material, and 0-39 % unsuitable material. Afterwards, six MS patients and two family members were interviewed to discuss the revised materials, the feedback was analyzed qualitatively. Finally, the revised flyers were converted into an eBook. Pearson correlation was calculated to determine inter-observer correlation between SAM scores assigned by the three evaluators. Paired t test was used for analysis of SAM scores between original and revised patient education materials.

Results: It was observed that no specialist evaluated the original or revised flyers as unsuitable; however, the revised flyers represent a significant improvement in total SAM score compared to the original flyers. Specifically, the mean (± standard deviation) SAM score improved from 60 ± 7% (adequate) for the original versions (n = 13) to 88 ± 4% (superior) for the revised flyers (n = 13) (p < 0.001).

Conclusions: Educational materials of our institution are free of factors that can affect the readability and comprehension of the contents and that they are written in a consistent and understandable way for the majority of patients to understand. The eBook was made available free of charge and disseminated over the Internet so that more people have access to the book and to read through a computer, tablet or smartphone.