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

1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23; and the FMF Arthritis Vasculitis and Orphan disease Research in Paediatric Rheumatology.

  1. Gulhane Military Medical Faculty, School of Nursing, Department of Paediatrics, Ankara, Turkey.
  2. UO Pediatria 2, Istituto G.Gaslini, Genova, Italy.
  3. Gulhane Military Medical Faculty, School of Nursing, Department of Paediatrics, Ankara, Turkey.
  4. University Medical Center, Department of Paediatrics, Utrecht, the Netherlands.
  5. Gulhane Military Medical Faculty, Department of Biostatistics, Ankara, Turkey.
  6. Ege University, Paediatric Rheumatology Unit, Izmir, Turkey.
  7. Dokuz Eylül University, Paediatric Rheumatology Unit, Izmir, Turkey.
  8. Istanbul Kanuni Sultan Süleyman Educational and Research Hospital, Paediatric Rheumatology Unit, Istanbul, Turkey.
  9. Istanbul University Cerrahpasa Medical Faculty, Paediatric Rheumatology Unit, Istanbul, Turkey.
  10. Erciyes University, Paediatric Rheumatology Unit, Kayseri, Turkey.
  11. Hacettepe University Medical Faculty, Paediatric Rheumatology Unit, Ankara, Turkey.
  12. Gulhane Military Medical Faculty, Child and Adolescent Psychiatry Unit, Ankara, Turkey.
  13. Selcuk University Medical Faculty, Paediatric Rheumatology Unit, Konya, Turkey.
  14. Gulhane Military Medical Faculty, Paediatric Rheumatology Unit, Ankara, Turkey.
  15. Sami Ulus Educational and Research Hospital, Paediatric Rheumatology Unit, Ankara, Turkey.
  16. Dokuz Eylül University, Paediatric Rheumatology Unit, Izmir, Turkey.
  17. Erciyes University, Paediatric Rheumatology Unit, Kayseri, Turkey.
  18. Gulhane Military Medical Faculty, School of Nursing, Department of Paediatrics, Ankara, Turkey.
  19. Division of Paediatric Rheumatology, Reference Center for Autoinflammatory Disorders CEREMAI, Bicêtre Hospital, University of Paris SUD, France.
  20. Istanbul University Cerrahpasa Medical Faculty, Paediatric Rheumatology Unit, Istanbul, Turkey.
  21. UO Pediatria 2, Istituto G.Gaslini, Genova, Italy.
  22. Hacettepe University Medical Faculty, Paediatric Rheumatology Unit, Ankara, Turkey.
  23. Gulhane Military Medical Faculty, Paediatric Rheumatology Unit, FMF Arthritis Vasculitis and Orphan Disease Research Center, Ankara, Turkey. erkandemirkaya@yahoo.com

CER9430 Submission on line
2016 Vol.34, N°6 ,Suppl.102 - PI 0129, PF 0135
Paediatric Rheumatology

Rheumatology Article

 

Abstract

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.

PMID: 27791950 [PubMed]

Received: 15/03/2016 - Accepted : 27/06/2016 - In Press: 25/10/2016 - Published: 25/10/2016