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Development of the autoinflammatory disease damage index (ADDI)

Ter Haar, NM; Annink, KV; Al-Mayouf, SM; Amaryan, G; Anton, J; Barron, KS; Benseler, SM; ... Frenkel, J; + view all (2016) Development of the autoinflammatory disease damage index (ADDI). Annals of the Rheumatic Diseases , 76 pp. 821-830. 10.1136/annrheumdis-2016-210092. Green open access

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Abstract

OBJECTIVES: Autoinflammatory diseases cause systemic inflammation that can result in damage to multiple organs. A validated instrument is essential to quantify damage in individual patients and to compare disease outcomes in clinical studies. Currently, there is no such tool. Our objective was to develop a common autoinflammatory disease damage index (ADDI) for familial Mediterranean fever, cryopyrin-associated periodic syndromes, tumour necrosis factor receptor-associated periodic fever syndrome and mevalonate kinase deficiency. METHODS: We developed the ADDI by consensus building. The top 40 enrollers of patients in the Eurofever Registry and 9 experts from the Americas participated in multiple rounds of online surveys to select items and definitions. Further, 22 (parents of) patients rated damage items and suggested new items. A consensus meeting was held to refine the items and definitions, which were then formally weighted in a scoring system derived using decision-making software, known as 1000minds. RESULTS: More than 80% of the experts and patients completed the online surveys. The preliminary ADDI contains 18 items, categorised in the following eight organ systems: reproductive, renal/amyloidosis, developmental, serosal, neurological, ears, ocular and musculoskeletal damage. The categories renal/amyloidosis and neurological damage were assigned the highest number of points, serosal damage the lowest number of points. The involvement of (parents of) patients resulted in the inclusion of, for example, chronic musculoskeletal pain. CONCLUSIONS: An instrument to measure damage caused by autoinflammatory diseases is developed based on consensus building. Patients fulfilled a significant role in this process.

Type: Article
Title: Development of the autoinflammatory disease damage index (ADDI)
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1136/annrheumdis-2016-210092
Publisher version: http://dx.doi.org/10.1136/annrheumdis-2016-210092
Language: English
Additional information: This article has been accepted for publication in Annals of the Rheumatic Diseases following peer review. The definitive copyedited, typeset version, Ter Haar, NM; Annink, KV; Al-Mayouf, SM; Amaryan, G; Anton, J; Barron, KS; Benseler, SM; (2016) Development of the autoinflammatory disease damage index (ADDI), Annals of the Rheumatic Diseases, is available online at: http://dx.doi.org/10.1136/annrheumdis-2016-210092.
Keywords: Familial Mediterranean Fever, Fever Syndromes, Outcomes research, Patient perspective
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine > Inflammation
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Infection, Immunity and Inflammation Dept
URI: https://discovery.ucl.ac.uk/id/eprint/1532711
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