Elaboração de um manual de orientações para crianças e adolescentes com lúpus eritematoso sistêmico juvenil

Abstract

Systemic Lupus Erythematosus (JSLE) is a chronic inflammatory disease, autoimmune and multisystemic, diagnosed in children and adolescents, which treatment requires the following of complex rules, difficult to adhere. This study describes the process of elaboration and evaluation of a guidelines manual for patients with JSLE. It was attended by eleven healthcare professionals and three children with JSLE and their mothers in four manual evaluation steps, which was prepared after professional literature analysis. In the first step, performed with four rheumatologists, 70% of the text has changed. In the second, carried out with four psychologists, 65.5%. In the third, with three other psychologists, text and illustrations were evaluated together, checking the comprehensibility and clarity of the material. The results showed that five of the 12 subjects (41.66%) achieved 100% agreement among the participants in all evaluated criteria. The data obtained in this step showed good acceptance of the material by the participants, since even in subjects who did not obtain 100% agreement on all items, disagreement percentage was low. In the fourth stage, performed with three children and their caregivers, participants achieved 100% accuracy when answering questionnaire after reading the manual, even demonstrating ignorance of the disease. The result was a final version of the manual with clear and objective text, easy to understand having as target children and adolescents.