ArticleRheumatology and therapy2023
Patient Experience of Sjögren's Disease and its Multifaceted Impact on Patients' Lives.
Article in Rheumatology and therapy, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis that pooled it.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
14 citing papers in PubMed, 1 synthesis or guideline pooled it, 12 citations in OpenAlex.
- Artificial intelligence and patient reported outcomes in ophthalmology.Journal of patient-reported outcomes · 2026Pooled it
- Salivary Dysfunction in Primary and Secondary Sjögren's Syndrome: Functional Assessment and the Exploratory Role of Salivary Microcrystallization.Dentistry journal · 2026Article
- When Dryness Extends to the Brain: Brain-Related Non-Sicca Manifestations of Sjögren's Disease.Journal of clinical medicine · 2026Review
- Extracting Quality of Life Information of Patients Diagnosed With Breast Cancer From Health Care Online Forum Posts: Data Feasibility Study.JMIR cancer · 2026Article
- Patient perspectives on life impact and unmet needs in giant cell arteritis and polymyalgia rheumatica: insights from social media.Rheumatology advances in practice · 2026Article
- A prospective multicenter register study exploring health-related quality of life in women with Sjögren's disease during pregnancy.Frontiers in global women's health · 2026Article
- [Effects and Mechanisms of Yangyin Yiqi Huoxue Formula on the Oral Microecology in Sjögren's Syndrome Model Mice].Sichuan da xue xue bao. Yi xue ban = Journal of Sichuan University. Medical science edition · 2025Article
- Use of complementary and alternative medicine (CAM) among people living with Sjögren's: a cross-sectional survey using a modified international CAM questionnaire (I-CAM-Q).Rheumatology international · 2025Article
- Prioritizing the Journey and the Destination Comment on "Achieving Diagnostic Excellence: Roadmaps to Develop and Use PatientReported Measures With an Equity Lens".International journal of health policy and management · 2025Article
- The Development and Content Validation of the Sjögren's Related Quality of Life Instrument (SRQoL).Rheumatology and therapy · 2024Article
- Invisible, Uncontrollable, Unpredictable: Illness Experiences in Women with Sjögren Syndrome.Journal of clinical medicine · 2024Article
- Social Listening in Gout: Impact of Proactive vs. Reactive Management on Self-Reported Emotional States.Rheumatology and therapy · 2024Article
- Patient listening on social media for patient-focused drug development: a synthesis of considerations from patients, industry and regulators.Frontiers in medicine · 2024Article
- The Comparison between the Composition of 100% Autologous Serum and 100% Platelet-Rich Plasma Eye Drops and Their Impact on the Treatment Effectiveness of Dry Eye Disease in Primary Sjogren Syndrome.Journal of clinical medicine · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 2 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionThe symptoms associated with Sjögren's disease (Sjögren's) are well-documented from the physician's perspective. However, from the patient's perspective, there is limited information on symptoms and their impact on health-related quality of life (HRQoL). This study aimed to provide an expanded understanding of patients' experience of Sjögren's and how symptoms impact HRQoL using a novel multi-method social media listening (SML) approach.
methodsA total of 26,950 social media posts with relevant content on Sjögren's posted by social media users from the USA, Canada, Australia, UK, France, Germany, Italy, Spain and China were analysed using an artificial intelligence natural language processing tool to explore patient conversations. Symptoms by level of impact on patients were characterised based on 'commonness' and 'bothersomeness'. Applied concept association analysis was used to assess relationships between symptom domains and impact domains. A qualitative framework was applied to explore words and phrases patients use to describe symptoms and their impacts.
resultsFive of the identified symptom domains were very impactful: Pain; Dry Mouth and Throat; Fatigue, Energy and Sleep; Emotional Balance; and Dry Eye. The symptom domains Pain and Dry Mouth and Throat were the most common, while those of Emotional Balance and Fatigue, Energy and Sleep were the most bothersome. Symptom domains most closely associated with four HRQoL impact domains were Fatigue, Energy and Sleep, Dry Mouth and Throat and Dry Eye with Daily Functioning; Fatigue, Energy and Sleep with Financial Health; Emotional Balance with Psychological Wellbeing and Gynaecological Issues with Social Wellbeing.
conclusionThe results of this SML study show that Sjögren's affects diverse aspects of patients' lives, with symptoms extending beyond dry eyes and mouth and impacting daily living and functioning. Because symptoms may affect patients differently, these results highlight the importance of measuring impact on HRQoL to assess patient outcomes and treatment options in routine clinical practice and clinical trials.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.