Patients' perspectives of living with Sjögren disease: A systematic review of qualitative studies from the OMERACT Sjögren disease working group
Lee, Adrian Y S Zembrzuska, Hanna Franke, Kyle B Gordon, Rachael Franke, Elisabeth F Kumble, Lindsay Boderman, Brianna Pelkas, Cristina Hitchcock, Mary E Cornec, Divi
Lee, Adrian Y S
Zembrzuska, Hanna
Franke, Kyle B
Gordon, Rachael
Franke, Elisabeth F
Kumble, Lindsay
Boderman, Brianna
Pelkas, Cristina
Hitchcock, Mary E
Cornec, Divi
Affiliation
Westmead Hospital; University of Sydney; University of Iowa; University of Adelaide; Royal Adelaide Hospital; University of Pittsburgh; University of Pennsylvania; University of Wisconsin; Universite de Brest; Queen Elizabeth Hospital Adelaide; University Hospitals Birmingham NHS Foundation Trust; University of Birmingham; Milton Keynes University Hospital NHS Foundation Trust; Assistance Publique-Hôpitaux de Paris; Université Paris-Saclay
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Publication date
2026-01-22
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Abstract
Objectives: Sjögren disease (SjD) is a common systemic autoimmune disease and patients experience a wide range of symptoms with unique emotional, social and physical impacts. Understanding the individual experience of SjD is crucial to providing comprehensive and sensitive care in the clinics. Therefore, the aim of this systematic review was to analyze primary literature that examined the lived experiences of patients with SjD.
Methods: Primary literature qualitatively exploring the lived experiences of SjD patients through interviews and/or focus groups were identified. Papers were included if they were written in English, participants were ≥ 18 years old and they fulfilled a diagnosis of SjD as per the 2002 American-European Consensus or 2016 American College of Rheumatology/European Alliance of Associations for Rheumatology criteria. Thematic analyses were performed using the Thomas and Harden approach.
Results: Nine of 1990 screened manuscripts (0.5 %) fulfilled our selection criteria. These comprised a total of 162 participants (154, 95 % female) across 10 countries. Thematic analysis revealed several key themes: the burden of the physical symptoms (such as sicca), social isolation, negative impact on function, unpredictability of the disease, diverse coping strategies, and the challenges of navigating the healthcare system. Few studies addressed any bias in the recruitment of patients or analyses of data.
Conclusion: SjD patients encounter a large variety of individual experiences in their illness that have important repercussions on quality of life. Understanding these experiences will help create a harmonized set of patient-centered outcomes to inform the generation of Outcome Measurement in Rheumatology (OMERACT) target domains in SjD.
Citation
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 Jan 22;77:152929. doi: 10.1016/j.semarthrit.2026.152929. Epub ahead of print.
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Article