Objective:

To define the burden, unmet needs, and treatment preferences associated with orofacial involvement in systemic sclerosis (SSc) to inform patient-driven priorities for future research.

Approach:

• Survey Design: An anonymous international patient survey was designed with 38 main questions focusing on patient demographics, oral hygiene habits, disease-related manifestations, and treatment-related issues.
• Survey Dissemination: The survey was administered to patients with a confirmed diagnosis of SSc over four weeks, utilizing social media and patient-led organizations for broad participation.
• Ethical Considerations: No ethical approval was required as the survey was anonymous and voluntary, with no identifiable data collected.

Key Findings:

• Common orofacial manifestations included xerostomia, facial appearance concerns, restricted mouth opening, dysphagia, and denture-related problems.
• Patients expressed greater confidence in rheumatologists than dentists regarding orofacial management.
• Neglected oral health needs were particularly related to periodontal health, enamel wear, and dental caries.
• Pooled prevalence estimates indicated 57.6% involvement of the lip area (95% CI 40.8%–72.9%) and 35.5% for oral mucosal involvement (95% CI 15.7%–62.0%) among SSc patients.

Interpretation:

The survey highlights significant physical, psychological, and social impacts of orofacial disease in SSc patients, indicating a need for improved management and research focus on these manifestations.

Limitations:

• The survey was limited to patients with a confirmed diagnosis of SSc, potentially excluding those with undiagnosed or less severe forms of the disease.
• The reliance on self-reported data may introduce bias in the findings.

Conclusion:

The findings emphasize the importance of addressing orofacial symptoms in SSc and the need for further research to understand patient needs and improve care.