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A novel assessment tool for clinical care of patients with autoinflammatory disease: juvenile autoinflammatory disease multidimensional assessment report.
Konukbay, Dilek; Gattorno, Marco; Yildiz, Dilek; Frenkel, Joost; Acikel, Cengizhan; Sozeri, Betul; Makay, Balahan; Aktay Ayaz, Nuray; Barut, Kenan; Kisaarslan, Aysenur; Bilginer, Yelda; Karaman, Dursun; Peru, Harun; Simsek, Dogan; Aydog, Ozlem; Unsal, Erbil; Gunduz, Zubeyde; Fidanci, Berna Eren; Kone-Paut, Isabelle; Kasapcopur, Ozgur; Ravelli, Angelo; Ozen, Seza; Demirkaya, Erkan.
Afiliación
  • Konukbay D; Gulhane Military Medical Faculty, School of Nursing, Department of Paediatrics, Ankara, Turkey.
  • Gattorno M; UO Pediatria 2, Istituto G.Gaslini, Genova, Italy.
  • Yildiz D; Gulhane Military Medical Faculty, School of Nursing, Department of Paediatrics, Ankara, Turkey.
  • Frenkel J; University Medical Center, Department of Paediatrics, Utrecht, the Netherlands.
  • Acikel C; Gulhane Military Medical Faculty, Department of Biostatistics, Ankara, Turkey.
  • Sozeri B; Ege University, Paediatric Rheumatology Unit, Izmir, Turkey.
  • Makay B; Dokuz Eylül University, Paediatric Rheumatology Unit, Izmir, Turkey.
  • Aktay Ayaz N; Istanbul Kanuni Sultan Süleyman Educational and Research Hospital, Paediatric Rheumatology Unit, Istanbul, Turkey.
  • Barut K; Istanbul University Cerrahpasa Medical Faculty, Paediatric Rheumatology Unit, Istanbul, Turkey.
  • Kisaarslan A; Erciyes University, Paediatric Rheumatology Unit, Kayseri, Turkey.
  • Bilginer Y; Hacettepe University Medical Faculty, Paediatric Rheumatology Unit, Ankara, Turkey.
  • Karaman D; Gulhane Military Medical Faculty, Child and Adolescent Psychiatry Unit, Ankara, Turkey.
  • Peru H; Selcuk University Medical Faculty, Paediatric Rheumatology Unit, Konya, Turkey.
  • Simsek D; Gulhane Military Medical Faculty, Paediatric Rheumatology Unit, Ankara, Turkey.
  • Aydog O; Sami Ulus Educational and Research Hospital, Paediatric Rheumatology Unit, Ankara, Turkey.
  • Unsal E; Dokuz Eylül University, Paediatric Rheumatology Unit, Izmir, Turkey.
  • Gunduz Z; Erciyes University, Paediatric Rheumatology Unit, Kayseri, Turkey.
  • Fidanci BE; Gulhane Military Medical Faculty, School of Nursing, Department of Paediatrics, Ankara, Turkey.
  • Kone-Paut I; Division of Paediatric Rheumatology, Reference Center for Autoinflammatory Disorders CEREMAI, Bicêtre Hospital, University of Paris SUD, France.
  • Kasapcopur O; Istanbul University Cerrahpasa Medical Faculty, Paediatric Rheumatology Unit, Istanbul, Turkey.
  • Ravelli A; UO Pediatria 2, Istituto G.Gaslini, Genova, Italy.
  • Ozen S; Hacettepe University Medical Faculty, Paediatric Rheumatology Unit, Ankara, Turkey.
  • Demirkaya E; Gulhane Military Medical Faculty, Paediatric Rheumatology Unit, FMF Arthritis Vasculitis and Orphan Disease Research Center, Ankara, Turkey. erkandemirkaya@yahoo.com.
Clin Exp Rheumatol ; 34(6 Suppl 102): 129-135, 2016.
Article en En | MEDLINE | ID: mdl-27791950
OBJECTIVES: 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 up 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 0.30. For the criterion validity, the correlation level between each dimension and the related scale ranged from medium (r=0.329, 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). CONCLUSIONS: The development of the JAIMAR introduces a new and multi-dimensional approach in paediatric rheumatology practice. It is a new tool for children with auto-inflammatory dis-ease and it may help enhance their quality of care.
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Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Fiebre Mediterránea Familiar / Encuestas y Cuestionarios / Enfermedades Autoinflamatorias Hereditarias / Fiebre Tipo de estudio: Prognostic_studies Aspecto: Patient_preference Límite: Adolescent / Child / Child, preschool / Female / Humans / Male Idioma: En Revista: Clin Exp Rheumatol Año: 2016 Tipo del documento: Article País de afiliación: Turquía Pais de publicación: Italia
Buscar en Google
Añadir a Mi BVS
Imprimir
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PubMed Links

Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Fiebre Mediterránea Familiar / Encuestas y Cuestionarios / Enfermedades Autoinflamatorias Hereditarias / Fiebre Tipo de estudio: Prognostic_studies Aspecto: Patient_preference Límite: Adolescent / Child / Child, preschool / Female / Humans / Male Idioma: En Revista: Clin Exp Rheumatol Año: 2016 Tipo del documento: Article País de afiliación: Turquía Pais de publicación: Italia