Living with a systemic autoinflammatory disease: burden of disease and effects on quality of life—an international patient survey
Rattachement africain : us, bh, au, ir, ca. Niveau de preuve : code pays fourni par la source.
Le résumé fourni par la source
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.
Ce résumé expose les affirmations des auteurs. BNTIC ne l’interprète pas comme une validation indépendante des résultats.
Le contrôle bibliographique ouvert
DOI retrouvé dans Crossref DOI retrouvé ; titre concordant.
- Titre Crossref
- Living with a systemic autoinflammatory disease: burden of disease and effects on quality of life—an international patient survey
- Date Crossref
- 01/06/2026
- Éditeur
- Elsevier BV
- Type
- journal-article
Ce recoupement confirme des métadonnées liées au DOI. Il ne confirme ni la méthode ni les conclusions de l’étude, et il ne compte pas comme une seconde source scientifique indépendante.
Où se fait cette recherche
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Boston Children's Hospital Division of Immunoslogy pays non établi dans la noticeÉtablissement de santé
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Boston Children's Museum pays non établi dans la noticeInstitution
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Arabian Gulf University Department of Pediatrics pays non établi dans la noticeUniversité ou école supérieure
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Sydney Children's Hospital Department of Rheumatology pays non établi dans la noticeÉtablissement de santé
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Sydney Children’s Hospitals Network pays non établi dans la noticeÉtablissement de santé
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Tehran University of Medical Sciences Division of Pediatrics pays non établi dans la noticeUniversité ou école supérieure
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Institute for Healthcare Improvement pays non établi dans la noticeOrganisation à but non lucratif
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Hackensack University Medical Center pays non établi dans la noticeÉtablissement de santé
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Hackensack Meridian Health pays non établi dans la noticeÉtablissement de santé
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BC Children's Hospital Division of Rheumatology pays non établi dans la noticeÉtablissement de santé
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Digital Research Alliance of Canada pays non établi dans la noticeOrganisme public
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Autoinflammatory Alliance pays non établi dans la noticeInstitution
Division of Immunoslogy — Boston Children's Hospital, Boston Children's Museum et Department of Pediatrics — Arabian Gulf University, avec 9 autres affiliations.
Une affiliation ne permet pas de déduire la nationalité d’un auteur.