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.
Similar content being viewed by others
References
Cimaz R, Marino A, Martini A (2017) How I treat juvenile idiopathic arthritis: a state of the art review. Autoimmun Rev 16:1008–1015. https://doi.org/10.1016/j.autrev.2017.07.014
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 31:390–392
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
Singh G, Athreya BH, Fries JF, Goldsmith DP (1994) Measurement of health status in children with juvenile rheumatoid arthritis. Arthritis Rheum 37:1761–1769
Demirkaya E, Consolaro A, Sonmez HE, Giancane G, Simsek D, Ravelli A (2016) Current research in outcome measures for pediatric rheumatic and autoinflammatory diseases. Curr Rheumatol Rep 18:8. https://doi.org/10.1007/s11926-015-0558-4
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
Powell C (2003) The Delphi technique: myths and realities. J Adv Nurs 41:376–382
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
Thangaratinam S, Redman CW (2005) The delphi technique. Obstet Gynaecol 7:120–125
Brunner HI, Ravelli A (2009) Developing outcome measures for paediatric rheumatic diseases. Best Pract Res Clin Rheumatol 23:609–624. https://doi.org/10.1016/j.berh.2009.07.001
Stein RE, Riessman CK (1980) The development of an impact-on-family scale: preliminary findings. Med Care 18:465–472
Singh G, Athreya BH, Fries JF, Goldsmith DP (1194) Measurement of health status in children with juvenile rheumatoid arthritis. Arthritis Rheum 37:1761–1769
Howe S, Levinson J, Shear E, Hartner S, McGirr G, Schulte M, Lovell D (1991) Development of a disability measurement tool for juvenile rheumatoid arthritis. The Juvenile Arthritis Functional Assessment Report for Children and their Parents. Arthritis Rheum 34:873–880
Consolaro A, Giancane G, Schiappapietra B, Davì S, Calandra S, Lanni S, Ravelli A (2016) Clinical outcome measures in juvenile idiopathic arthritis. Pediatr Rheumatol Online J 14:23. https://doi.org/10.1186/s12969-016-0085-5
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
Shyen S, Amine B, Rostom S, Badri EL, Ezzahri D, Mawani M, Moussa N, Gueddari F, Wabi S, Abouqal M, Chkirate R, Hajjaj-Hassouni B N (2014) Sleep and its relationship to pain, dysfunction, and disease activity in juvenile idiopathic arthritis. Clin Rheumatol 33:1425–1431
Smits-Engelsman B, Klerks M, Kirby A (2011) Beighton score: a valid measure for generalized hypermobility in children. J Pediatr 158:119–123. https://doi.org/10.1016/j.jpeds.2010.07.021 (Epub 2010 Sep 17)
Foster HE, Jandial S (2013) pGALS—paediatric gait arms legs and spine: a simple examination of the musculoskeletal system. Pediatr Rheumatol Online J 11:44. https://doi.org/10.1186/1546-0096-11-44
Crombez G, Bijttebier P, Eccleston C, Mascagni T, Mertens G, Goubert L, Verstraeten K (2003) The child version of the pain catastrophizing scale (PCS-C): a preliminary validation. Pain 104:639–646
Birmaher B, Khetarpal S, Brent D, Cully M, Balach L, Kaufman J, Mckenzie Neer S (1995) Screen for child anxiety related disorders (SCARED). Child Adolescent Psychiatry 36:545–553. https://doi.org/10.1097/00004583-199704000-00018
Chorpita BF, Tracey SA, Brown TA, Collica TJ, Barlow DH (1997) Assessment of worry in children and adolescents: an adaptation of the Penn State Worry Questionnaire. Behav Res Ther 35:569–581
Breau LM, McGrath PJ, Camfield CS, Finley GA (2002) Psychometric properties of the non-communicating children’s pain checklist-revised. Pain 99:349–357
La Greca AM, Stone WL (1993) Social anxiety scale for children-revised: factor structure and concurrent validity. J Clin Child Psychol 22:17–27. https://doi.org/10.1207/s15374424jccp2201_2
Shahid A (2011) Center for epidemiological studies depression scale for children (CES-DC). In: Shahid A (ed) STOP, THAT and One Hundred Other Sleep Scales 1st edn. Springer, New York, pp 93–96
Iglesias M, Cuttica RJ, Herrera Calvo M, Micelotta M, Pringe A, Brusco M (2006) Design and validation of a new scale to assess the functional ability in children with juvenile idiopathic arthritis (JIA). Clin Exp Rheumatol 24:713–718
Palermo TM, Lewandowski AS, Long AC, Burant CJ (2008) Validation of a self-report questionnaire version of the Child Activity Limitations Interview (CALI): The CALI-21. Pain 139:644–652. https://doi.org/10.1016/j.pain.2008.06.022 (Epub 2008 Aug 8)
Merkel SI, Voepel-Lewis T, Shayevitz JR, Malviya S (1997) The FLACC: a behavioral scale for scoring postoperative pain in young children. Pediatr Nurs 23:293–297
Thompson E (2015) Hamilton rating scale for anxiety (HAM-A). Occup Med (Lond) 65:601. https://doi.org/10.1093/occmed/kqv054
Landgraf JM, Abetz L, Ware JE (1999) Child Health Questionnaire (CHQ): A user’s manual Health Institute, New England Medical Center Boston
Chorpita BF, Moffitt CE, Gray J (2005) Psychometric properties of the revised child anxiety and depression scale in a clinical sample. Behav Res Ther 43:309–322
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 57:913–920
Rickels K, Howard K (1970) The physician questionnaire: a useful tool in psychiatric drug research. Psychopharmacologia 17:338–344
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):158–162
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)
Batu ED, Keniş Coşkun Ö, Sönmez HE, Karali D, Arslanoğlu Aydin E, Bilginer Y, Karadağ Saygi E, Özen S (2017) Acceptability and practicality of the Turkish translation of pediatric gait arm legs and spine in turkish children. J Clin Rheumatol 23:421–424
Beydemir F (2008) The Impact on Famıly Scale’ın (Aile Etki Ölçeği) Türkçe’ye uyarlanması, geçerlilik ve güvenilirliği Pamukkale Üniversitesi Sağlık Bilimleri Enstitüsü
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)
Hahn YS, Kim JG (2010) Pathogenesis and clinical manifestations of juvenile rheumatoid arthritis. Korean J Pediatr 53:921–30. https://doi.org/10.3345/kjp.2010.53.11.921 (Epub 2010 Nov 30)
Leegaard A, Lomholt JJ, Thastum M, Herlin T (2013) Decreased pain threshold in juvenile idiopathic arthritis: a cross-sectional study. J Rheumatol 40:1212–1217. https://doi.org/10.3899/jrheum.120793 (Epub 2013 May 1)
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)
Rangel L, Garralda ME, Hall A, Woodham S (2003) Psychiatric adjustment in chronic fatigue syndrome of childhood and in juvenile idiopathic arthritis. Psychol Med 33:289–297
Brunner HI, Giannini EH (2003) Health-related quality of life in children with rheumatic diseases. Curr Opin Rheumatol 15:602 – 12
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 78–88
Bouaddi I, Rostom S, El Badri D, Hassani A, Chkirate B, Amine B, Hajjaj-Hassouni N (2013) Impact of juvenile idiopathic arthritis on schooling. BMC Pediatr 13:2. https://doi.org/10.1186/1471-2431-13-2
Peterson LS, Mason T, Nelson AM, O’Fallon WM, Gabriel SE (1997) Psychosocial outcomes and health status of adults who have had juvenile rheumatoid arthritis: a controlled, population-based study. Arthritis Rheum 40:2235–2240
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
Lomholt JJ, Thastum M, Herlin T (2013) Pain experience in children with juvenile idiopathic arthritis treated with anti-TNF agents compared to non-biologic standard treatment. Pediatr Rheumatol Online J 11:21. https://doi.org/10.1186/1546-0096-11-21
Weiss JE, Luca NJ, Boneparth A, Stinson J (2014) Assessment and management of pain in juvenile idiopathic arthritis. Paediatr Drugs 16:473–81. https://doi.org/10.1007/s40272-014-0094-0
Acknowledgements
We thank to all clinicians and physiotherapists, especially to Pınar Kisacik, PT-PhD, for their help during Delphi surveys and data collection.
Funding
No financial support was received in the preparation of this article.
Author information
Authors and Affiliations
Contributions
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.
Corresponding author
Ethics declarations
Conflict of interest
The authors declare no conflict of interest.
Ethical approval
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).
Electronic supplementary material
Below is the link to the electronic supplementary material.
Rights and permissions
About this article
Cite this article
Unal, E., Batu, E.D., Sonmez, H.E. et al. A new biopsychosocial and clinical questionnaire to assess juvenile idiopathic arthritis: JAB-Q. Rheumatol Int 38, 1557–1564 (2018). https://doi.org/10.1007/s00296-018-4075-4
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00296-018-4075-4