Almeida Thalles G, Ferreira Alessandra R H, da Silva Felipe S, Chaves Caio C, Assunção Bárbara N, Martins Priscila S, das Dores Alessandra S, de Moura Regina M F, Andrade Júnia A, Santos Flávia P S T, Ferreira Gilda A, Calderaro Débora C
Universidade Federal de Minas Gerais, Medical School. Av. Prof. Alfredo Balena, 190 - Santa Efigênia, Belo Horizonte 30130-100, MG, Brazil.
Faculdade Ciências Médicas de Minas Gerais, Medical School. Alameda Ezequiel Dias, 275 - Centro, Belo Horizonte 30130-110, MG, Brazil.
PEC Innov. 2023 Apr 11;2:100154. doi: 10.1016/j.pecinn.2023.100154. eCollection 2023 Dec.
PURPOSE/OBJECTIVES: Systemic sclerosis (SSc) is a rare chronic autoimmune disease characterized by vascular abnormalities and connective tissue disorders. In 2021, the multidisciplinary team of the university hospital recognized a demand for oral health information among SSc patients. This study aims to describe the development of an SSc oral health booklet and its validation by people with SSc.
For the development of the booklet, the project creators employed the action research methodology involving ten stages. SSc patients evaluated the material by filling out a digital form.
One hundred and thirty-one people with SSc evaluated the booklet. It received an average score of 9.73 (SD: 0.80) in relevance, 9.82 (SD: 0.47) in explicitness, and 9.49 (SD: 0.93) in aesthetics. The final version was emailed to the participants and posted on social media.
This is the first booklet that deeply addresses these issues in Portuguese and constitutes a soft technology to instruct and assist patients with SSc.
The production of high-quality educational materials on oral health for patients with SSc is necessary. The online distribution increased its reach and had great importance in the context of the COVID-19 pandemic.
目的/目标：系统性硬化症（SSc）是一种罕见的慢性自身免疫性疾病，其特征为血管异常和结缔组织紊乱。2021年，大学医院的多学科团队认识到SSc患者对口腔健康信息的需求。本研究旨在描述一本SSc口腔健康手册的编制过程及其在SSc患者中的验证情况。
为编制该手册，项目创建者采用了包含十个阶段的行动研究方法。SSc患者通过填写数字表格对材料进行评估。
131名SSc患者对手册进行了评估。手册在相关性方面的平均得分为9.73（标准差：0.80），在明晰性方面为9.82（标准差：0.47），在美观性方面为9.49（标准差：0.93）。最终版本通过电子邮件发送给参与者，并发布在社交媒体上。
这是第一本用葡萄牙语深入探讨这些问题的手册，是一种指导和帮助SSc患者的软技术。
为SSc患者制作高质量的口腔健康教育材料很有必要。在新冠疫情背景下，在线分发扩大了其覆盖面，具有重要意义。
