Dados do Trabalho

Título

Multiple sclerosis in detail: eBook for patients

Resumo

Background: Multiple Sclerosis (MS) is a chronic neuroinflammatory and neurodegenerative disease that is a leading cause of neurological disability in young adults. Educational materials are important for health promotion, increasing knowledge about the disease and improving quality of life. Objective: Analyze and improve the readability and adequacy of educational materials for patients and relatives with Multiple Sclerosis. Methods: Thirteen original educational materials in flyers format written by a multidisciplinary team over 37 years were 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: The eBook was produced based on the needs of target audience of the educational action, in understandable language and presentation. The material can be considered as a facilitator or support for conceptual and perceptual change and enrichment of skills or attitudes.

Palavras Chave

Multiple sclerosis; educational material; patient education; readability.