title: A novel assessment tool for clinical care of patients with autoinflammatory disease: juvenile autoinflammatory disease multidimensional assessment report.
abstract: 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 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.
authors: Gulhane Military Medical Faculty, School of Nursing, Department of Paediatrics, Ankara, Turkey.
authors: Dilek
authors: D
authors: Konukbay
authors: UO Pediatria 2, Istituto G.Gaslini, Genova, Italy.
authors: Marco
authors: M
authors: Gattorno
authors: Gulhane Military Medical Faculty, School of Nursing, Department of Paediatrics, Ankara, Turkey.
authors: Dilek
authors: D
authors: Yildiz
authors: University Medical Center, Department of Paediatrics, Utrecht, the Netherlands.
authors: Joost
authors: J
authors: Frenkel
authors: Gulhane Military Medical Faculty, Department of Biostatistics, Ankara, Turkey.
authors: Cengizhan
authors: C
authors: Acikel
authors: Ege University, Paediatric Rheumatology Unit, Izmir, Turkey.
authors: Betul
authors: B
authors: Sozeri
authors: Dokuz Eylül University, Paediatric Rheumatology Unit, Izmir, Turkey.
authors: Balahan
authors: B
authors: Makay
authors: Istanbul Kanuni Sultan Süleyman Educational and Research Hospital, Paediatric Rheumatology Unit, Istanbul, Turkey.
authors: Nuray
authors: N
authors: Aktay Ayaz
authors: Istanbul University Cerrahpasa Medical Faculty, Paediatric Rheumatology Unit, Istanbul, Turkey.
authors: Kenan
authors: K
authors: Barut
authors: Erciyes University, Paediatric Rheumatology Unit, Kayseri, Turkey.
authors: Aysenur
authors: A
authors: Kisaarslan
authors: Hacettepe University Medical Faculty, Paediatric Rheumatology Unit, Ankara, Turkey.
authors: Yelda
authors: Y
authors: Bilginer
authors: Gulhane Military Medical Faculty, Child and Adolescent Psychiatry Unit, Ankara, Turkey.
authors: Dursun
authors: D
authors: Karaman
authors: Selcuk University Medical Faculty, Paediatric Rheumatology Unit, Konya, Turkey.
authors: Harun
authors: H
authors: Peru
authors: Gulhane Military Medical Faculty, Paediatric Rheumatology Unit, Ankara, Turkey.
authors: Dogan
authors: D
authors: Simsek
authors: Sami Ulus Educational and Research Hospital, Paediatric Rheumatology Unit, Ankara, Turkey.
authors: Ozlem
authors: O
authors: Aydog
authors: Dokuz Eylül University, Paediatric Rheumatology Unit, Izmir, Turkey.
authors: Erbil
authors: E
authors: Unsal
authors: Erciyes University, Paediatric Rheumatology Unit, Kayseri, Turkey.
authors: Zubeyde
authors: Z
authors: Gunduz
authors: Gulhane Military Medical Faculty, School of Nursing, Department of Paediatrics, Ankara, Turkey.
authors: Berna Eren
authors: BE
authors: Fidanci
authors: Division of Paediatric Rheumatology, Reference Center for Autoinflammatory Disorders CEREMAI, Bicêtre Hospital, University of Paris SUD, France.
authors: Isabelle
authors: I
authors: Kone-Paut
authors: Istanbul University Cerrahpasa Medical Faculty, Paediatric Rheumatology Unit, Istanbul, Turkey.
authors: Ozgur
authors: O
authors: Kasapcopur
authors: UO Pediatria 2, Istituto G.Gaslini, Genova, Italy.
authors: Angelo
authors: A
authors: Ravelli
authors: Hacettepe University Medical Faculty, Paediatric Rheumatology Unit, Ankara, Turkey.
authors: Seza
authors: S
authors: Ozen
authors: Gulhane Military Medical Faculty, Paediatric Rheumatology Unit, FMF Arthritis Vasculitis and Orphan Disease Research Center, Ankara, Turkey. erkandemirkaya@yahoo.com.
authors: Erkan
authors: E
authors: Demirkaya
mesh_terms: D000293:Adolescent; D000367:Age Factors; D002648:Child; D002675:Child, Preschool; D017281:Cost of Illness; D010505:Familial Mediterranean Fever / Q000175:diagnosis* / Q000503:physiopathology / Q000523:psychology / Q000628:therapy; D005260:Female; D005334:Fever / Q000175:diagnosis* / Q000503:physiopathology / Q000523:psychology / Q000628:therapy; D006304:Health Status; D056660:Hereditary Autoinflammatory Diseases / Q000175:diagnosis* / Q000503:physiopathology / Q000523:psychology / Q000628:therapy; D006801:Humans; D008297:Male; D011237:Predictive Value of Tests; D011788:Quality of Life; D015203:Reproducibility of Results; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires