ArticleBMC oral health2016
The lived experience of Sjögren's Syndrome.
Article in BMC oral health, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
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Who cites it
14 citing papers in PubMed, 29 citations in OpenAlex.
- The Development and Validation of the Partial Denture Experience Questionnaire (P-DEQ): Reliability and Validity.Gerodontology · 2026Article
- Adapting to living with systemic autoimmune rheumatic diseases; a qualitative exploration of patient and clinician perspectives.Rheumatology international · 2025Article
- Invisible, Uncontrollable, Unpredictable: Illness Experiences in Women with Sjögren Syndrome.Journal of clinical medicine · 2024Article
- A Smartphone App to Support Self-Management for People Living With Sjögren's Syndrome: Qualitative Co-Design Workshops.JMIR human factors · 2024Article
- The experience of dry mouth and screening for Sjogren's syndrome by the dentist: patient-reported experiences.BMC oral health · 2023Article
- Beyond dry eye: The greater extent of Sjögren's systemic disease symptoms, the impact of COVID-19 and perceptions towards telemedicine identified through a patient co-designed study.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- Patient Experience of Sjögren's Disease and its Multifaceted Impact on Patients' Lives.Rheumatology and therapy · 2023Article
- Analysis of the dental care queries in the "Mouth-Nose" discussion forum of the French association of patients with Gougerot-Sjögren's syndromes and dryness.BMC oral health · 2022Observational
- Illness Experience and Quality of Life in Sjögren Syndrome Patients.International journal of environmental research and public health · 2022Article
- An Update on the Lived Experience of Dry Mouth in Sjögren's Syndrome Patients.Frontiers in oral health · 2021Review
- The Experiences of Functioning and Health of Patients With Primary Sjögren's Syndrome: A Multicenter Qualitative European Study.Frontiers in medicine · 2021Article
- Mesenchymal Stem Cells Extract (MSCsE)-Based Therapy Alleviates Xerostomia and Keratoconjunctivitis Sicca in Sjogren's Syndrome-Like Disease.International journal of molecular sciences · 2019Article
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Corrections and comments
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Authors and funding
4 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundSjögren's Syndrome is an autoimmune exocrinopathy characterised by lymphocytic infiltration of exocrine glands in multiple sites, with dry mouth as a primary presenting symptom. Although quantitative studies have shown the negative impact of both dry mouth and Sjögren's Syndrome on patients' quality of life, no qualitative diary and interview study has been undertaken to examine the lived experience of dry mouth for Sjögren's Syndrome sufferers. The aim of this qualitative study was to provide clinicians with insight into how dry mouth can impact on the daily lives of Sjögren's Syndrome patients.
methodsThe American-European Consensus Group (AECG) Revised International Classification criteria were used to identify participants from patients seen in an oral medicine clinic. After pilot study work to test the approach, the 10 main study participants were recruited. Diary entries and semi-structured interviews were used to explore how dry mouth affects their lives. Owing to the exploratory nature of the research, thematic content analysis was applied, allowing the themes to arise naturalistically from the data without bias or elicitation.
resultsThe data showed that it is unrealistic to understand the experience of a single symptom, but that the disease as a whole needs to be taken into perspective. The empirical evidence supported four main themes that depicted the lived experience of Sjögren's Syndrome. These included: (1) the journey to diagnosis; (2) disease impact spectrum (of dry mouth amid other symptoms); (3) interactions with healthcare professionals; and (4) the positive coping process.
conclusionsThe findings revealed patients' perspectives on diagnosis, coping with dry mouth and Sjögren's Syndrome, and interaction with healthcare professionals. Dry mouth is not a trivial symptom for Sjögren's Syndrome sufferers; it has considerable impact on their day-to-day lives. Healthcare professionals need to understand patients as individuals in their environment in order to be part of the Sjögren's journey.
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