Oral health education for systemic sclerosis patients: A booklet report

**Background:** Systemic sclerosis (SSc) is a rare chronic autoimmune disease characterized by vascular abnormalities and connective tissue disorders, leading to progressive fibrosis of the skin and internal organs. Orofacial manifestations are common and include microstomia, xerostomia, telangiectasia, and increased risk of dental caries and periodontal disease. These changes, combined with impaired hand function, make oral hygiene challenging. Patient education is crucial for improving self-efficacy and health outcomes. In 2021, a multidisciplinary team at a university hospital identified a demand for oral health information among SSc patients and developed a booklet to address this need.

**Methods:** The study employed an action research methodology with ten stages: (1) identification of the need for information; (2) data collection; (3) organization, analysis, and interpretation of data; (4) text development; (5) creation of pictures and graphic design; (6) endorsement by developers; (7) evaluation by SSc patients; (8) assessment of criticisms and suggestions; (9) final modifications; (10) online publication and digital distribution. The initial need was assessed via a Google Forms questionnaire answered by 33 SSc patients, which identified oral changes as the top concern. The booklet was developed by a multidisciplinary team including medical students, rheumatologists, occupational therapists, dentists, speech therapists, and physical therapists. The first version was sent to members of an SSc patient association along with a questionnaire evaluating the booklet's relevance, explicitness, and aesthetics on a 0–10 visual analog scale, as well as open-ended questions about difficulties and suggestions.

**Key Results:** One hundred thirty-one people with SSc evaluated the booklet. Among them, 120 (90.8%) completed high school, and 60 (50%) had a university degree. One hundred twelve (86%) participants stated the booklet provided new information; 122 (93%) reported no reading difficulties, though 8 (6%) noted small letter size. The booklet received an average score of 9.73 (SD: 0.80) for relevance, 9.82 (SD: 0.47) for explicitness, and 9.49 (SD: 0.93) for aesthetics. Two unresolved questions emerged: “How to relieve dry mouth?” and “Can people with SSc have lip augmentation aesthetic procedures?”. Suggestions included increasing letter size, improving contrast, and modifying the figure of skin thickening. In response, the authors increased letter size, improved contrast, added information on dry mouth relief, and modified the skin thickening figure. The final version, written in Brazilian Portuguese, was emailed to participants, posted on social media, and released on a Brazilian medical school website. A printed version is distributed to SSc patients at the university hospital.

**Clinical Implications:** The booklet addresses key orofacial issues in SSc, including microstomia, xerostomia, periodontal disease, dental caries, and occupational therapy adaptations for oral hygiene. It provides exercises to improve oral mobility and guidelines for denture cleaning. The high patient ratings and positive feedback suggest the booklet is an effective educational tool. However, the study's limitations include a highly educated sample (50% with a university degree), which may limit generalizability to patients with lower educational levels. The authors emphasize the need for individualized professional guidance for exercises and oral care. The online distribution proved valuable during the COVID-19 pandemic, increasing reach. This is the first booklet in Portuguese to deeply address oral health in SSc, serving as a soft technology to empower patients and improve self-care.