A new biopsychosocial and clinical questionnaire to assess juvenile idiopathic arthritis: JAB-Q
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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.
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.
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.
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.
KeywordsJuvenile idiopathic arthritis Outcome Biopsychosocial
We thank to all clinicians and physiotherapists, especially to Pınar Kisacik, PT-PhD, for their help during Delphi surveys and data collection.
All authors contributed to the study concept, design, acquisition, and interpretation of data. EDB, HES, ZSA, GA, NBK, ES, SD, AO, and FBO drafted the manuscript. Literature review was conducted by NBK, GA, and AO. EU, YB, and SO revised the manuscript critically. DAH and RA performed the statistical analysis. All authors have read and approved the final form of the manuscript for publication.
No financial support was received in the preparation of this article.
Compliance with ethical standards
Conflict of interest
The authors declare no conflict of interest.
The study was approved by the ethics committee of Hacettepe University (March 18 2015; GO 15/231-11). Written informed consent was obtained from all participants (both children and their parents).
- 2.Petty RE, Southwood TR, Manners P, Baum J, Glass DN, Goldenberg J, He X, Maldonado-Cocco J, Orozco-Alcala J, Prieur AM, Suarez-Almazor ME, Woo P, International League of Associations for Rheumatology (2004) International League of Associations for Rheumatology classification of juvenile idiopathic arthritis: second revision, Edmonton, 2001. J Rheumatol 31:390–392PubMedGoogle Scholar
- 3.Consolaro A, Ruperto N, Bazso A, Pistorio A, Magni-Manzoni S, Filocamo G, Malattia C, Viola S, Martini A, Ravelli A; Paediatric Rheumatology International Trials Organisation (2009) Development and validation of a composite disease activity score for juvenile idiopathic arthritis. Arthritis Rheum 61:658–666. https://doi.org/10.1002/art.24516 CrossRefPubMedGoogle Scholar
- 6.Filocamo G, Consolaro A, Schiappapietra B, Dalprà S, Lattanzi B, Magni-Manzoni S, Ruperto N, Pistorio A, Pederzoli S, Civino A, Guseinova D, Masala E, Viola S, Martini A, Ravelli A (2011) A new approach to clinical care of juvenile idiopathic arthritis: the Juvenile Arthritis Multidimensional Assessment Report. J Rheumatol 38:938–953. https://doi.org/10.3899/jrheum.100930 CrossRefPubMedGoogle Scholar
- 8.Stinson JN, Connelly M, Jibb LA, Schanberg LE, Walco G, Spiegel LR, Tse SM, Chalom EC, Chira P, Rapoff M (2012) Developing a standardized approach to the assessment of pain in children and youth presenting to pediatric rheumatology providers: a Delphi survey and consensus conference process followed by feasibility testing. Pediatr Rheumatol Online J 10:7. https://doi.org/10.1186/1546-0096-10-7 CrossRefPubMedPubMedCentralGoogle Scholar
- 9.Thangaratinam S, Redman CW (2005) The delphi technique. Obstet Gynaecol 7:120–125Google Scholar
- 15.Carle AC, Dewitt EM, Seid M (2011) Measures of health status and quality of life in juvenile rheumatoid arthritis: Pediatric Quality of Life Inventory (PedsQL) Rheumatology Module 3.0, Juvenile Arthritis Quality of Life Questionnaire (JAQQ), Paediatric Rheumatology Quality of Life Scale (PRQL), and Childhood Arthritis Health Profile (CAHP). Arthritis Care Res (Hoboken) 63(Suppl 11):438–445. https://doi.org/10.1002/acr.20560 CrossRefGoogle Scholar
- 29.Landgraf JM, Abetz L, Ware JE (1999) Child Health Questionnaire (CHQ): A user’s manual Health Institute, New England Medical Center BostonGoogle Scholar
- 31.Filocamo G, Sztajnbok F, Cespedes-Cruz A, Magni-Manzoni S, Pistorio A, Viola S, Ruperto N, Buoncompagni A, Loy A, Martini A, Ravelli A (2007) Development and validation of a new short and simple measure of physical function for juvenile idiopathic arthritis. Arthritis Rheum 57:913–920CrossRefGoogle Scholar
- 33.Ozdogan H, Ruperto N, Kasapçopur O, Bakkaloglu A, Arisoy N, Ozen S, Ugurlu U, Unsal E, Melikoglu M; Paediatric Rheumatology International Trials Organisation (2001) The Turkish version of the Childhood Health Assessment Questionnaire (CHAQ) and the Child Health Questionnaire (CHQ). Clin Exp Rheumatol 19(4 Suppl 23):158–162Google Scholar
- 34.Tarakci E, Baydogan SN, Kasapcopur O, Dirican A (2013) Cross-cultural adaptation, reliability, and validity of the Turkish version of PedsQL 3.0 Arthritis Module: a quality-of-life measure for patients with juvenile idiopathic arthritis in Turkey. Qual Life Res 22:531–536. https://doi.org/10.1007/s11136-012-0180-0 (Epub 2012 Apr 29)CrossRefPubMedGoogle Scholar
- 36.Beydemir F (2008) The Impact on Famıly Scale’ın (Aile Etki Ölçeği) Türkçe’ye uyarlanması, geçerlilik ve güvenilirliği Pamukkale Üniversitesi Sağlık Bilimleri EnstitüsüGoogle Scholar
- 37.Sousa VD, Rojjanasrirat W (2011) Translation, adaptation and validation of instruments or scales for use in cross-cultural health care research: a clear and user-friendly guideline. J Eval Clin Pract 17(2):268–74. https://doi.org/10.1111/j.1365-2753.2010.01434.x (Epub 2010 Sep 28)CrossRefGoogle Scholar
- 40.Ding T, Hall A, Jacobs K, David J (2008) Psychological functioning of children and adolescents with juvenile idiopathic arthritis is related to physical disability but not to disease status. Rheumatology 47:660–664. https://doi.org/10.1093/rheumatology/ken095 (Epub 2008 Mar 20)CrossRefPubMedGoogle Scholar
- 43.Duffy CM, Feldman BM (2016) Assessment of health status, function, and quality of life outcomes. Petty RE ed Textbook of Pediatric Rheumatology 7th edn. Elsevier, Philadelphia, pp 78–88Google Scholar
- 46.Vanoni F, Suris JC, von Scheven-Gête A, Fonjallaz B, Hofer M (2016) The difference of disease perception by juvenile idiopathic arthritis patients and their parents: analysis of the JAMAR questionnaire. Pediatr Rheumatol Online J 14:2. https://doi.org/10.1186/s12969-015-0063-3 CrossRefPubMedPubMedCentralGoogle Scholar