ArticleEULAR rheumatology open2026
Living with a systemic autoinflammatory disease: burden of disease and effects on quality of life-an international patient survey.
Article in EULAR rheumatology open, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
1 citing paper in PubMed.
- Periodontitis and Rheumatoid Arthritis: Shared Pathophysiology, Bidirectional Association, and Therapeutic Implications-A Narrative Review.Healthcare (Basel, Switzerland) · 2026Review
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.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Objectives: Systemic autoinflammatory diseases (SAIDs) significantly impact patients' and their families' quality of life (QoL). This international study aimed to evaluate the extent of this burden by gathering patient-reported data on their SAIDs and its effects on daily living and well-being. Methods: A 24-question online survey, developed by the Autoinflammatory Alliance and KAISZ/VAISZ in English and Dutch, was distributed internationally from 2017 to 2018. The survey included both closed-ended and open-ended questions addressing the SAID diagnosis and perceived impact on QoL. Participants were recruited through online social media platforms, and responses were collected using convenience sampling. Results: A total of 371 responses were received. Most respondents were from the United States (64%). The most common diagnoses were undifferentiated SAIDs (24%); periodic fever, aphthous stomatitis, pharyngitis, adenitis (19%); and cryopyrin-associated periodic syndrome (12%). Participants saw an average of 6.5 doctors before diagnosis, with 7% seeing over 20 doctors. Common symptoms included headaches (94%), fatigue (86%), pain (80%), and fever (79%). Assessment of QoL revealed an average score of 61 of the 100 between flares, which dropped to 18 of the 100 during flares. Daily activities were severely limited during flares for 52.5% of participants; 81% of participants reported that SAIDs impacted their work, career, or education. Conclusions: This study highlights the profound impact of SAIDs on QoL, emphasising the need for ongoing research and improved care for these rare conditions. Early diagnosis, targeted treatment, and psychosocial support can help mitigate the burden of these diseases.
Identifiers
What OpenQuestion holds
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.