A novel assessment tool for clinical care of patients with autoinflammatory disease: juvenile autoinflammatory disease multidimensional assessment report

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dc.contributor.authorKonukbay, Dilek
dc.contributor.authorGattorno, Marco
dc.contributor.authorYıldız, Dilek
dc.contributor.authorFrenkel, Joost
dc.contributor.authorAçıkel, Cengizhan
dc.contributor.authorSözeri, Betül
dc.contributor.authorMakay, Balahan Bora
dc.date.accessioned2020-03-26T19:22:57Z
dc.date.available2020-03-26T19:22:57Z
dc.date.issued2016
dc.departmentSelçuk Üniversitesien_US
dc.description.abstractObjective. To develop and test a new multidimensional questionnaire for assessment of children with auto-inflammatory disease (AID) such as FMF, PFAPA, HIDS, TRAPS in standard clinical care. Methods. The juvenile auto-inflammatory disease multidimensional assessment report (JAIMAR) includes 16 parent or patient-centered measures and four dimensions that assess functional status, pain, therapeutic compliance and health-related quality of life (physical, social, school, emotional status) with disease outcome. It is proposed for use as both a proxy-report and a patient self report, with the suggested age range of 8-18 years for use as a self-report. Results. 250 children with FMF were included in the study. Total of 179 forms were filled tip by parents and patients, and 71 forms were filled up by parents having children less than 8 years. Completing and scoring the JAIMAR can be done in 15 minutes. For the JAIMAR's dimensions, the Cronbach's alpha coefficient for internal consistency was between 0.507-0.998. There was a significant and a positive correlation between the test-retest scale scores (ICC=0.607-0.966). Concerning construct validity, all factors loadings were above 030. For the criterion validity, the correlation level between each dimension and the related scale ranged from medium (r=0329, p<0.0001) to large (r=0.894, p<0.0001). The parents' proxy-reported and children's self reported data were outstandingly concordant (r=0.770-0.989). Conclusion. The development of the JAIMAR introduces a new and multidimensional approach in paediatric rheumatology practice. It is a new tool for children with auto-inflammatory disease and it may help enhance their quality of care.en_US
dc.identifier.endpageS135en_US
dc.identifier.issn0392-856Xen_US
dc.identifier.issn1593-098Xen_US
dc.identifier.issue6en_US
dc.identifier.scopusqualityQ2en_US
dc.identifier.startpageS129en_US
dc.identifier.urihttps://hdl.handle.net/20.500.12395/33192
dc.identifier.volume34en_US
dc.identifier.wosWOS:000388065900020en_US
dc.identifier.wosqualityQ3en_US
dc.indekslendigikaynakWeb of Scienceen_US
dc.indekslendigikaynakScopusen_US
dc.language.isoenen_US
dc.publisherCLINICAL & EXPER RHEUMATOLOGYen_US
dc.relation.ispartofCLINICAL AND EXPERIMENTAL RHEUMATOLOGYen_US
dc.relation.publicationcategoryMakale - Uluslararası Hakemli Dergi - Kurum Öğretim Elemanıen_US
dc.rightsinfo:eu-repo/semantics/closedAccessen_US
dc.selcuk20240510_oaigen_US
dc.subjectauto-inflammatory diseaseen_US
dc.subjectoutcome instrumenten_US
dc.subjectmultidimensionalen_US
dc.subjectproxy reporten_US
dc.subjectfamilial Mediterranean feveren_US
dc.titleA novel assessment tool for clinical care of patients with autoinflammatory disease: juvenile autoinflammatory disease multidimensional assessment reporten_US
dc.typeArticleen_US

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