Understanding the Burden of Orofacial Involvement and Patient Treatment Preferences in Systemic Sclerosis: Results...

Orofacial manifestations are significantly impactful in patients with systemic sclerosis (SSc) yet remain understudied, with no dedicated clinical guidelines to inform their management.

An international online survey comprised38 questions addressing orofacial manifestations of SSc, including patients' confidence in their treating teams and perceived unmet needs. Descriptive statistics were used to summarize the data.

We included responses from 334 individuals with SSc, who were predominantly female (95%), older than 55 years (>90%), of White race (87%), and residing in North America (68%) or Europe (23.7%). Most participants were registered with a dentist (90%) and attended at least biannually (64%); however, although 71% brushed at least twice daily, only 49% used interdental aids daily. Difficulties with oral hygiene were mainly due to restricted mouth opening (76.7%) and reduced dexterity (65%). The most frequently reported orofacial manifestations were xerostomia (81%), facial appearance concerns (76%), restricted mouth opening (75%), dysphagia (71.3%), and denture-related problems (70% of denture users). Following SSc diagnosis, increased dental extractions (12.6%) and worsening periodontal health (16.3%) were reported. Patients expressed more confidence in their rheumatologists (69.7%) than their dentists (46.1%) in raising concerns regarding the management of SSc-related orofacial issues. Over half of the respondents (55.7%) felt their oral health needs were neglected, particularly regarding periodontal health (51%), enamel wear (35%), and dental caries (28%).

Orofacial issues are common and impactful yet frequently overlooked by clinicians involved in SSc patient care and management. We have identified important patient-focused priorities to inform the future research agenda.