Pres-Final-2210: Qualitative Aspects Of Autoinflammatory Diseases

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Pw02-023 - Qualitative Aspects Of Autoinflammatory Diseases

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The invisible part of the iceberg : qualitative aspects of childhood vasculitis

The aim of this study was to develop a multidimensional assessment instrument named 'Juvenile Vasculitis Multidimensional Assessment Report' (J-VAMAR) to measure all the domains of the vasculitis. In this qualitative study, it is primarily aimed to enrich the item generation for the J-VAMAR.Twelve children with vasculitis and their mothers (n=12) were enrolled in this study. The data were collected using both a demographic data form and a semi-structured interview form. The study was performed on individual patient face-to face interview. Data were analysed by grounded theory and the N Vivo 9 software program.Four categories were obtained. These categories were (i) physical effects of the illness, (ii) emotional effects of the illness, (iii) social effects of the illness and (iv) experienced challenges related to treatment process. In the physical effect category severe pain, physical limitations, weakness and fatigue; in emotional effect category thought of death, hopelessness and dissatisfaction about body image; in the social effects category decrease in academic performance, absenteeism to school and concealing the sickness from friends were the most common features. In the fourth category, subjects complained of lifelong drug use and frequency of daily drug consumptions.These results provide evidence-based data for the assessment of children with vasculitis by several domains including physical, emotional and social aspects as well as treatment protocols. The study provides the basis and/or justification for selecting the domains that the developing multidimensional instrument should include

DEVELOPMENT AND VALIDATION OF JUVENILE AUTOINFLAMMATORY DISEASE MULTIDIMENSIONAL ASSESSMENT REPORT (JAIMAR)

15th Annual European Congress of Rheumatology (EULAR) -- JUN 11-14, 2014 -- Paris, FRANCEWOS: 00034691980632

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

WOS: 000388065900020Objective. 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

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

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