Journal article
Patients’ perspectives of living with Sjögren disease: A systematic review of qualitative studies from the OMERACT Sjögren disease working group
Seminars in arthritis and rheumatism, Vol.77, 152929
01/22/2026
DOI: 10.1016/j.semarthrit.2026.152929
PMID: 41610675
Abstract
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.
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.
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.
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.
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Details
- Title: Subtitle
- Patients’ perspectives of living with Sjögren disease: A systematic review of qualitative studies from the OMERACT Sjögren disease working group
- Creators
- Adrian Y.S. Lee - Westmead HospitalHanna Zembrzuska - University of IowaKyle B. Franke - Royal Adelaide HospitalRachael Gordon - University of PittsburghElisabeth F. Franke - The University of AdelaideLindsay Kumble - Hospital of the University of PennsylvaniaBrianna Boderman - University of Wisconsin–MadisonCristina Pelkas - The University of AdelaideMary E. Hitchcock - University of Wisconsin–MadisonDivi Cornec - Université de Bretagne OccidentaleMaureen Rischmueller - Queen Elizabeth HospitalSimon J. Bowman - University of BirminghamRaphaèle Seror - Université Paris-SaclaySara S. McCoy - University of Wisconsin–MadisonDana DiRenzo - Penn Center for AIDS Research
- Resource Type
- Journal article
- Publication Details
- Seminars in arthritis and rheumatism, Vol.77, 152929
- DOI
- 10.1016/j.semarthrit.2026.152929
- PMID
- 41610675
- NLM abbreviation
- Semin Arthritis Rheum
- ISSN
- 0049-0172
- eISSN
- 1532-866X
- Publisher
- Elsevier Inc
- Grant note
- NovartisBristol Myers SquibbJohnson and JohnsonSjogren's Foundation
Equal financial sponsorship to support the OMERACT Sjogren's working group, collectively as a whole, has been provided by Novartis, Bristol Myers Squibb, and Johnson and Johnson. DDD's salary is partly funded by a grant from the Sjogren's Foundation in support of this project.
- Language
- English
- Date published
- 01/22/2026
- Academic Unit
- Psychiatry; Immunology; Internal Medicine
- Record Identifier
- 9985132068002771
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