Development and validation of juvenile autoinflammatory disease multidimensional assessment report (JAIMAR)

Konukbay, Dilek; Yildiz, D; Açıkel, Cengizhan; Sözeri, Betül; Makay, Balahan; Ayaz, NA; Barut, Kenan; Kısaarslan, Ayşenur Paç; Bilginer, Yelda; Peru, Harun; Erdoğan, Özlem; Ünsal, Erbil; Kasapçopur, Özgür; Gündüz, Zübeyde; Ravelli, Angelo; Koné‐Paut, Isabelle; Frenkel, Joost; Gattorno, Marco; Özen, Seza; Demirkaya, Erkan

doi:10.1186/1546-0096-12-s1-o23

Cited by 3 publications

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“…A number of PROs that can be used to guide FMF disease management were outlined, including the AIDAI. Juvenile Autoinflammatory Disease Multidimensional Assessment Report (JAIMAR) -a multidimensional questionnaire for assessing children with auto-inflammatory disease in standard clinical care [20] -was proposed as a suitable assessment tool that reflects QoL in FMF. Other practical measures that were discussed included restriction in daily activity, fatigue and chronic pain, missed work/school days, and generic QoL measures.…”

Section: Patient-reported Outcomes (Pros)mentioning

confidence: 99%

Defining colchicine resistance/intolerance in patients with familial Mediterranean fever: a modified-Delphi consensus approach

et al. 2021

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Objectives Colchicine is the main treatment for FMF. Although a number of individuals with FMF are intolerant/resistant to colchicine, there is no standard definition of colchicine resistance/intolerance. We developed a set of evidence-based core statements defining colchicine resistance/intolerance in patients with FMF that may serve as a guide for clinicians and health authorities. Methods A set of statements was identified using a modified-Delphi consensus-based approach. The process involved development of an initial colchicine resistance/intolerance-related questionnaire derived from a systematic literature review. The questionnaire, which was completed by an international panel of 11 adult and paediatric rheumatologists with expertise in FMF, was analysed anonymously. The results informed draft consensus statements that were discussed by a round-table expert panel, using a nominal group technique to agree on the selection and wording of the final statements. Results Consensus among the panel was achieved on eight core statements defining colchicine resistance/intolerance in patients with FMF. A definition of resistance was agreed upon that included recurrent clinical attacks (average one or more attacks per month over a 3-month period) or persistent laboratory inflammation in between attacks. Other core statements recognize the importance of assessing treatment adherence, and the impact of active disease and intolerance to colchicine on quality of life. Conclusion Based on expert opinion, a set of evidence-based core statements defining colchicine resistance/intolerance in patients with FMF were identified to help guide clinicians and health authorities in the management of patients with FMF.

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Section: Patient-reported Outcomes (Pros)mentioning

confidence: 99%

Defining colchicine resistance/intolerance in patients with familial Mediterranean fever: a modified-Delphi consensus approach

et al. 2021

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Evaluation of the Current Disease Scoring Systems in Familial Mediterranean Fever

Demirkaya¹,

Livneh

2015

Rare Diseases of the Immune System

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Current Research in Outcome Measures for Pediatric Rheumatic and Autoinflammatory Diseases

et al. 2016

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A rational management of children and adolescents with rheumatic and autoinflammatory diseases requires the regular assessment of the level of disease activity and of child health and well-being through the use of well-validated outcome measures. Ideally, such instruments should be simple and feasible and easily applicable in standard clinical practice. In recent years, a number of novel outcome measures have been developed and validated for use in pediatric patients with rheumatic and autoinflammatory illnesses. Furthermore, there has been an increased focus on the appraisal of child and parent perception of the disease impact. The new tools have markedly enlarged the spectrum of disorders and health domains that can be assessed in a standardized way. This progress will help to enhance the reliability of research studies and clinical trials. The aim of the present review is to provide an update of the recent advances in this field of research.

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Development and validation of juvenile autoinflammatory disease multidimensional assessment report (JAIMAR)

Cited by 3 publications

References 0 publications

Defining colchicine resistance/intolerance in patients with familial Mediterranean fever: a modified-Delphi consensus approach

Defining colchicine resistance/intolerance in patients with familial Mediterranean fever: a modified-Delphi consensus approach

Evaluation of the Current Disease Scoring Systems in Familial Mediterranean Fever

Current Research in Outcome Measures for Pediatric Rheumatic and Autoinflammatory Diseases

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