ArticlePloS one2017
It's more than dryness and fatigue: The patient perspective on health-related quality of life in Primary Sjögren's Syndrome - A qualitative study.
Article in PloS one, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04858464 (Reliability, Validity, and Cross-Cultural Adaptation of the Turkish Version of the Primary Sjögren Syndrome Quality of Life), which is not on this map. Cited by 38 papers, 3 of them syntheses that pooled it.
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The trial behind it
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.
Reliability, Validity, and Cross-Cultural Adaptation of the Turkish Version of the Primary Sjögren Syndrome Quality of Life (PSS-QoL) Questionnaire
Who cites it
38 citing papers in PubMed, 3 syntheses or guidelines pooled it, 75 citations in OpenAlex.
- Clinical Practice Guideline for Evaluation and Management of Peripheral Nervous System Manifestations in Sjögren's Disease.Arthritis care & research · 2026Guideline
- Guideline
- The Effectiveness and Safety of Total Glucosides of Paeony in Primary Sjögren's Syndrome: A Systematic Review and Meta-Analysis.Frontiers in pharmacology · 2019Pooled it
- Patient Journey, Disease Burden, Treatment Patterns, and the Impact of Delayed Diagnosis Among Patients With Sjögren's Disease: A Real-World US Survey.ACR open rheumatology · 2026Article
- Frequency-dependent and temporal variability of low-frequency fluctuations in patients with primary Sjögren's syndrome.Lupus science & medicine · 2025Article
- Recommendations for Aligned Nomenclature of Peripheral Nervous System Disorders Across Rheumatology and Neurology.Arthritis & rheumatology (Hoboken, N.J.) · 2025Article
- Sjögren's disease, occupational performance and quality of life.The British journal of occupational therapy · 2025Article
- The Development and Content Validation of the Sjögren's Related Quality of Life Instrument (SRQoL).Rheumatology and therapy · 2024Article
- Patients' recollection about the onset of Sjögren's disease - a mixed methods study on the patients' perspective.Arthritis research & therapy · 2024Article
- Brazilian version of the "Primary Sjögren's Syndrome - Quality of Life questionnaire (PSS-QoL)": translation, cross-cultural adaptation and validation.Advances in rheumatology (London, England) · 2024Article
- 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
- Evaluating the effects of humor therapy on fatigue levels of hemodialysis patients: A single-blind, randomized clinical trial study.Journal of research in medical sciences : the official journal of Isfahan University of Medical Sciences · 2024Article
- Cross-cultural adaptation and validation of the Chinese version of the PSS-QoL questionnaire.PloS one · 2024Observational
- The Translation, Validation and Cultural Adaptation of Questionnaires Assessing the Quality of Life and Fatigue among Patients with Sjogren's Syndrome for the Romanian Context.Clinics and practice · 2023Article
- Physicians' Perspectives on AI in Clinical Decision Support Systems: Interview Study of the CURATE.AI Personalized Dose Optimization Platform.JMIR human factors · 2023Article
- Development and content validity assessment of the Dry Eye Disease Questionnaire in patients with dry eye disease, meibomian gland dysfunction, and Sjögren's syndrome dry eye disease.Journal of patient-reported outcomes · 2023Article
- Depression in Sjögren's syndrome mediates the relationship between pain, fatigue, sleepiness, and overall quality of life.Rheumatology and immunology research · 2023Article
- Muscle architecture in patients with primary Sjögren syndrome.Archives of rheumatology · 2023Article
- Development and testing of an alternative responder definition for EULAR Sjögren's Syndrome Patient Reported Index (ESSPRI).RMD open · 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
10 authors at 4 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesIn Primary Sjögren's Syndrome (PSS), there is an apparent lack of data concerning the perspectives of patients, their needs, preferences and difficulties of daily life. This qualitative study was conducted to explore perspectives and needs of patients with PSS that influence health related quality of life (HRQL).
methodsWe recruited 20 PSS patients fulfilling the American-European consensus classification criteria out of the PSS cohort of the Medical University Graz, Austria. In total, 6 focus group sessions (with three to four patients per group) were performed. A modified meaning condensation procedure was used to analyse the data.
resultsThe interview analysis resulted in 484 meaning units, 254 subconcepts and 86 concepts. The identified concepts were grouped into three dimensions: physical dimension, psychological & emotional challenges and social life & daily living. A dependency between the three categories was identified. The concepts most commonly reported by patients were related to the physical dimension: pain and dryness as well as complaints associated with/provoked by these symptoms. Patients also reported shortness of breath, fatigue und constipation.
conclusionsThis qualitative study underpins that HRQL in PSS patients is affected by several factors. The problems are not limited to dryness, pain and fatigue while the complaints secondary to these symptoms are important to patients with PSS significantly affecting physical, psychological and social life components of HRQL. A disease-specific patient related outcome measures for clinical practice and trials should be developed considering the different aspects of HRQL in PSS.
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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.