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    DEVELOPMENT AND VALIDATION OF JUVENILE AUTOINFLAMMATORY DISEASE MULTIDIMENSIONAL ASSESSMENT REPORT (JAIMAR)
    (BMJ PUBLISHING GROUP, 2014) Konukbay, Dilek; Yıldız, Dilek; Açıkel, Cengizhan; Sözeri, Betül; Makay, Balahan Bora; Ayaz, Nuray; Barut, Kenan; Kısaarslan, Ayşenur Paç; Bilginer, Yelda; Peru, Harun; Erdoğan, Özlem; Ünsal, Erbil; Kasapçopur, Özgür; Gündüz, Zübeyde; Özen, Seza; Demirkaya, Erkan
    [Abstract not Available]
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    Development of a medication adherence scale for familial Mediterranean fever (MASIF) in a cohort of Turkish children
    (CLINICAL & EXPER RHEUMATOLOGY, 2015) Yeşilkaya, Şirzat; Açıkel, Cengizhan; Fidancı, Berna Eren; Polat, Adem; Sözeri, Betül; Ayaz, Nuray Aktay; Makay, Balahan Bora
    Objective. To develop and assess the validity and reliability of an adherence scale concerning medical treatment in paediatric FMF patients. Methods. The Medication Adherence Scale in FMF Patients (MASIF) is a 18-item questionnaire that evaluates adherence to medication in four domains. Validation of the instrument was accomplished in paediatric FMF patients (aged 2-18 years) under medication at least for 6 months. The first step was to build up the scale through qualitative approach (with interviews using semi-structured questions). Validation analyses included assessment of feasibility, face and content validity; construct validity, internal consistency and test-retest reliability. Results. One hundred and fifty patients with FMF were enrolled in the study. The mean age of the patients was 11.11 +/- 4.02 years and 48.7% of them were male. The MASIF was found to be feasible and valid for both face and content. It correlated with the Morisky Medication Adherence Scale as a gold standard thereby demonstrating good construct validity (r=0.5 15, p<0.001). Assessment of content validity identified four subscales. The internal consistency, Cronbach's alpha was 0.728. There was a positive and significant correlation between test and retest scores (r-0.843; p<0.001). Also, a significant correlation between parents' and children's reports (r=0.781, p<0.001). Conclusion. Based on these results, the use of this scale to assess and follow up the adherence to treatment in paediatric FMF patients under medical treatment is recommended.
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    A novel assessment tool for clinical care of patients with autoinflammatory disease: juvenile autoinflammatory disease multidimensional assessment report
    (CLINICAL & EXPER RHEUMATOLOGY, 2016) Konukbay, Dilek; Gattorno, Marco; Yıldız, Dilek; Frenkel, Joost; Açıkel, Cengizhan; Sözeri, Betül; Makay, Balahan Bora
    Objective. 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.