Can dentists recognise the hidden burden of Sjögren disease beyond xerostomia?

Lee AYS, Zembrzuska H, Franke KB, Gordon R, Franke EF, Kumble L, Boderman B, Pelkas C, Hitchcock ME, Cornec D, Rischmueller M, Bowman SJ, Seror R, McCoy SS, DiRenzo D. Patients' perspectives of living with Sjögren disease: A systematic review of qualitative studies from the OMERACT Sjögren disease working group. Semin Arthritis Rheum. 2026;77:152929 https://doi.org/10.1016/j.semarthrit.2026.152929 DESIGN: Systematic review with thematic synthesis of qualitative studies conducted in accordance with PRISMA guidelines to synthesise the lived experiences of adults with Sjögren disease.

MEDLINE (via PubMed), Embase and the Cochrane Library were searched for English-language studies published between July 2002 and July 2024. Eligible studies included adults (≥18 years) diagnosed with Sjögren disease according to the 2002 American-European Consensus Group or the 2016 ACR/EULAR classification criteria and explored patients' lived experiences using qualitative interviews or focus groups. Quantitative (survey) studies, case reports and conference abstracts were excluded.

Two reviewers independently screened studies and extracted data. Methodological quality of the included studies was independently assessed using the Critical Appraisal Skills Programme (CASP) Qualitative Checklist and the Walsh-Downe criteria. Primary qualitative data underwent line-by-line coding followed by thematic synthesis using the Thomas and Harden approach to generate descriptive categories and overarching analytical themes.

Nine qualitative studies involving 162 participants from ten countries met the inclusion criteria. Five overarching themes characterised patients' experiences: the invisible and unpredictable nature of symptoms; coping and adaptation strategies; impaired social, occupational and interpersonal functioning; challenges navigating healthcare systems; and varying perceptions of disease and treatment. Persistent oral and ocular dryness, fatigue and pain were consistently associated with reduced quality of life, while delayed diagnosis, inadequate disease awareness and feelings of dismissal by healthcare professionals emerged as recurrent concerns.

The lived experience of Sjögren disease extends well beyond sicca symptoms and encompasses substantial physical, emotional and social burdens. Integrating patients' perspectives into clinical care and outcome assessment may facilitate more patient-centred management and improve the relevance of future clinical research.