Edibe Unal1, Ezgi Deniz Batu2, Hafize Emine Sonmez2, Zehra Serap Arici3, Gamze Arin1, Nur Banu Karaca1, Erdal Sag2, Selcan Demir2, Duygu Aydin Hakli4, Aykut Ozcadirci1, Fatma Birgul Oflaz1, Reha Alpar4, Yelda Bilginer2, Seza Ozen5,6. 1. Department of Physical Therapy and Rehabilitation, Hacettepe University Faculty of Health Sciences, Ankara, Turkey. 2. Department of Pediatric Rheumatology, Hacettepe University Faculty of Medicine, Ankara, Turkey. 3. Department of Pediatric Rheumatology, Şanlıurfa Training and Research Hospital, Şanlıurfa, Turkey. 4. Department of Biostatistics, Hacettepe University Faculty of Medicine, Ankara, Turkey. 5. Department of Pediatric Rheumatology, Hacettepe University Faculty of Medicine, Ankara, Turkey. sezaozen@gmail.com. 6. Department of Pediatrics, Division of Rheumatology, Hacettepe University Faculty of Medicine, 06100, Ankara, Turkey. sezaozen@gmail.com.
Abstract
OBJECTIVE: To create a new multidimensional questionnaire for the assessment of juvenile idiopathic arthritis (JIA) patients in standard clinical practice and study the validity and reliability of this questionnaire. METHODS: The Juvenile Arthritis Biopsychosocial and Clinical Questionnaire (JAB-Q) was created using the Delphi technique and consensus conference following an initial literature search. The questionnaire has three parts including a clinician form, child form and parent form. This is a patient/parent-centered outcome tool, which helps us to evaluate the biopsychosocial aspects of the patient, including disease activity, posture, functional and psychosocial status, fatigue, and performance in school. From January 2015 to January 2018, 6-18 years old children with JIA were enrolled in the study. The previously validated questionnaires were also applied to each participant to validate the JAB-Q: Juvenile Idiopathic Disease Arthritis Score (JADAS) and Childhood Health Assessment Questionnaire (CHAQ), and the Family Impact Questionnaire (FIS). The same questionnaire was re-administered after one week to assess the test-retest reliability in randomly selected 50 children and their parents. RESULTS: A group of experts were invited to the Delphi survey. After the Delphi tours, the final form of the questionnaire containing three parts as clinician form, child form and parent form was created. This tool was applied to 310 JIA patients and their parents. The children and parents easily handled the JAB-Q and filled the forms in around 10-15 min. The validity of the clinician, child and parents' forms were assessed by the JADAS, CHAQ, and FIS, respectively. The validity of these three scales were determined as moderate. In addition, the test-retest reliability of the clinician, child and parents' forms were considerably high. CONCLUSION: JAB-Q is a valid and reliable multidimensional biopsychosocial outcome tool that can be used routinely in clinical practice of pediatric rheumatology. The main advantage of this tool is incorporation of patients' and parents' perspectives separately while providing a practical and standard setting for the clinician's evaluation. However, further validation of this tool in an independent cohort is needed to improve its applicability.
OBJECTIVE: To create a new multidimensional questionnaire for the assessment of juvenile idiopathic arthritis (JIA) patients in standard clinical practice and study the validity and reliability of this questionnaire. METHODS: The Juvenile Arthritis Biopsychosocial and Clinical Questionnaire (JAB-Q) was created using the Delphi technique and consensus conference following an initial literature search. The questionnaire has three parts including a clinician form, child form and parent form. This is a patient/parent-centered outcome tool, which helps us to evaluate the biopsychosocial aspects of the patient, including disease activity, posture, functional and psychosocial status, fatigue, and performance in school. From January 2015 to January 2018, 6-18 years old children with JIA were enrolled in the study. The previously validated questionnaires were also applied to each participant to validate the JAB-Q: Juvenile Idiopathic Disease Arthritis Score (JADAS) and Childhood Health Assessment Questionnaire (CHAQ), and the Family Impact Questionnaire (FIS). The same questionnaire was re-administered after one week to assess the test-retest reliability in randomly selected 50 children and their parents. RESULTS: A group of experts were invited to the Delphi survey. After the Delphi tours, the final form of the questionnaire containing three parts as clinician form, child form and parent form was created. This tool was applied to 310 JIA patients and their parents. The children and parents easily handled the JAB-Q and filled the forms in around 10-15 min. The validity of the clinician, child and parents' forms were assessed by the JADAS, CHAQ, and FIS, respectively. The validity of these three scales were determined as moderate. In addition, the test-retest reliability of the clinician, child and parents' forms were considerably high. CONCLUSION:JAB-Q is a valid and reliable multidimensional biopsychosocial outcome tool that can be used routinely in clinical practice of pediatric rheumatology. The main advantage of this tool is incorporation of patients' and parents' perspectives separately while providing a practical and standard setting for the clinician's evaluation. However, further validation of this tool in an independent cohort is needed to improve its applicability.
Authors: Ross E Petty; Taunton R Southwood; Prudence Manners; John Baum; David N Glass; Jose Goldenberg; Xiaohu He; Jose Maldonado-Cocco; Javier Orozco-Alcala; Anne-Marie Prieur; Maria E Suarez-Almazor; Patricia Woo Journal: J Rheumatol Date: 2004-02 Impact factor: 4.666
Authors: M J Iglesias; R J Cuttica; M Herrera Calvo; M Micelotta; A Pringe; M I Brusco Journal: Clin Exp Rheumatol Date: 2006 Nov-Dec Impact factor: 4.473
Authors: H Ozdogan; N Ruperto; O Kasapçopur; A Bakkaloglu; N Arisoy; S Ozen; U Ugurlu; E Unsal; M Melikoglu Journal: Clin Exp Rheumatol Date: 2001 Jul-Aug Impact factor: 4.473