Berard, Roberta

Laxer, Ronald M.

English

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Western University Scholarship@Western Paediatrics Publications Paediatrics Department 5-1-2011 Improving the quality of care in children with juvenile idiopathic arthritis: A step in the right direction Roberta Berard Western University, roberta.berard@lhsc.on.ca Ronald M. Laxer Hospital for Sick Children University of Toronto Follow this and additional works at: https://ir.lib.uwo.ca/paedpub Citation of this paper: Berard, Roberta and Laxer, Ronald M., "Improving the quality of care in children with juvenile idiopathic arthritis: A step in the right direction" (2011). Paediatrics Publications. 800. https://ir.lib.uwo.ca/paedpub/800 789Berard and Laxer: EditorialPersonal non-commercial use only. The Journal of Rheumatology Copyright © 2011. All rights reserved.EditorialImproving the Quality of Care inChildren with Juvenile IdiopathicArthritis: A Step in the RightDirectionJuvenile idiopathic arthritis (JIA) is heterogeneous in both itsclinical presentation and etiology1,2. JIA can result in perma-nent physical disability due to joint damage, while additionalmorbidity can be related to its treatment and to effects ongrowth and development. Children with inadequately treatedor recalcitrant JIA may have chronic pain, mood disturbances,and difficulty with peer relationships, school performance,and attainment of educational and vocational goals3,4,5,6,7,8.Improved health related quality of life (HRQOL) and physi-cal function are increasingly recognized as key treatmentgoals because of the influence of this illness on all aspects ofa child’s life9. Accurate evaluation of this multidimensionaland heterogeneous disease is challenging, but crucial toimprove the quality of care and outcomes in JIA.Over the last decade there has been an increasing com-mitment to the assessment and improvement of quality ofcare following the report of The Institute of Medicine (IOM)Committee on Quality of Healthcare in America, “To Err isHuman”10. The American College of Rheumatology (ACR)and American Board of Pediatrics have charged PediatricRheumatology with developing quality measures (QM) forJIA. The initial work of this group included use of an onlineDelphi survey technique with participation from physicians,advanced practice nurses, and parents of children with JIAfor the selection process of QM. In 2008, preliminary QMwere published11. A nominal group technique was used toreach consensus on the proposed set of QM for the processof care. These include 4 broad domains: disease control,safety monitoring, access and relationship (patient/familysatisfaction with healthcare)12. Within several of the QM,the use of validated, reliable, age-appropriate tools formeasurement of pain, HRQOL, functional ability, self-effi-cacy, and patient/ parent satisfaction is proposed. A collabo-rative network, “Pediatric Rheumatology Care andOutcomes Improvement Network (PR-COIN),” has recent-ly been established to develop and evaluate specific diseasemanagement strategies to improve the care of children withJIA and to determine how best to incorporate these strate-gies into clinical practice.In this issue of The Journal, Filocamo, et al describe theJuvenile Arthritis Multidimensional Assessment Report(JAMAR), an instrument for assessment of children withJIA for use in standard clinical care13. The authors proposedthat this report may help enhance the quality of care of chil-dren with JIA by addressing “efficiency” and “efficacy,”two of the quality domains of the “STEEEP” acronym out-lined by the IOM (safe, timely, effective, efficient, equi-table, patient-centered)14. One of the novel aspects of thistool is the inclusion of patient-reported outcomes (PRO), ina single tool including morning stiffness, medication sideeffects, self-report of articular symptoms, and patient satis-faction rating13. The inclusion of PRO is important toimprove quality of care as these are part of the “patient-cen-tered care” domain of quality outlined by the IOM.Patient-specific indices offer the advantage of identify-ing salient issues for each patient and are more likely tofocus medical attention on the relevant issues; however,they also present unique challenges to ensure the item/mea-sure is reliable, valid, and provides useful information.Without standardization of the items, the response scales donot have the same meaning for each patient. This can makeit difficult to understand the numeric meaning of a score.Second, using the data beyond intraindividual comparisonis problematic15. Further studies are needed to improve ourunderstanding of how to interpret the numeric scores ofpatient-specific indices at both the individual and grouplevel.The JAMAR contains two measurement tools, theJuvenile Arthritis Functionality Scale (JAFS)16 and thePediatric Rheumatology Quality of Life Scale17, whichwere developed only recently. For both tools, initial valida-tion studies have been reported. Although research on qual-ity of care in pediatric rheumatology is in its infancy, therehas been a longstanding focus on the measurement andreporting of disease outcome, HRQOL, and functional out-come in JIA. There are many tools available to measureclinical response (i.e., ACR Pediatric 3018), functional sta-tus (i.e., CHAQ19), and quality of life (PedsQLTM20, ChildSee A new approach to clinical care of JIA, page 938 www.jrheum.orgDownloaded on August 8, 2022 from Health Questionnaire21, JAQQ22). In addition, several ofthese instruments have been validated and are more widelyused both in clinical and research settings. It would seemrational to use these existing tools both in clinical care andresearch to allow for comparison between patient groups.The potential use of a multidimensional report as a sur-rogate for a clinical encounter is intriguing. It is interestingto consider how we assess our individual patient’s status andthe factors that guide our management decisions. Studiescomparing the decision-making process after a clinicalencounter versus using the results of a multidimensionalreport, such as the JAMAR, would be of interest.In summary, JIA is a heterogeneous and multidimension-al disease. Improving the process of quality care delivery isa topical issue. The development of the JAMAR important-ly illustrates the breadth and potential content in a multi -dimensional report. Future work should be focused on refin-ing and validating the existing measures used in JIA both inclinical practice and in the research setting. Particular atten-tion needs to be focused on interpreting scores/summaryscales for PRO. An international consensus on disease activ-ity measures, functional assessment, assessment ofHRQOL, and PRO is key to advancing work in this area. Inorder to evaluate the QM for the process of care, universalagreement on measures to be used will facilitate implemen-tation of QM into routine clinical practice for clinicians. Theaim should be to minimize duplication of work and focus on implementation of QM to improve the process of care, then to evaluate these tools and refine them in the plan-do-study-act rapid cycles of improvement23.ROBERTA BERARD, MD, MSc, FRCPC,Assistant Professor of Pediatrics,University of Western Ontario,London, Ontario;RONALD M. LAXER, MDCM, FRCPC,Division of Rheumatology,The Hospital for Sick Children,Professor of Paediatrics and Medicine,University of Toronto,Toronto, Ontario, CanadaAddress correspondence to Dr. Laxer. E-mail: ronald.laxer@sickkids.caREFERENCES1. Ravelli A, Martini A. Juvenile idiopathic arthritis. Lancet2007;369:767-78.2. Martini A. Lovell DJ. Juvenile idiopathic arthritis: state of the artand future perspectives. Ann Rheum Dis 2010:69:1260-3.3. Packham JC, Hall MA. Long-term follow-up of 246 adults withjuvenile idiopathic arthritis: education and employment.Rheumatology 2002;41:1436-9.4. Packham JC, Hall MA. Long-term follow-up of 246 adults withjuvenile idiopathic arthritis: functional outcome. Rheumatology2002;41:1428-35.5. Packham JC, Hall MA, Pimm TJ. Long-term follow-up of 246adults with juvenile idiopathic arthritis: predictive factors for moodand pain. Rheumatology 2002;41:1444-9.6. Foster HE, Marshall N, Myers A, Dunkley P, Griffiths ID. Outcomein adults with juvenile idiopathic arthritis: a quality of life study.Arthritis Rheum 2003;48:767-75.7. Packham JC, Hall MC. Long-term follow-up of 246 adults withjuvenile idiopathic arthritis: social function, relationships and sexual activity. Rheumatology 2002;41:1440-3.8. Minden K, Niewerth M, Listing J, Biedermann T, Bollow M,Schöntube M, et al. Long-term outcome in patients with juvenileidiopathic arthritis. Arthritis Rheum 2002;46:2392-401.9. Brunner HI, Giannini EH. Health-related quality of life in childrenwith rheumatic diseases. Current Opin Rheumatol 2003;15:602-12.10. Kohn LT, Corrigan JM, Donaldson MS, editors. To err is human.Building a safer health system. Committee on Quality of HealthCare in America. Washington: Institute of Medicine; NationalAcademy Press; 1999.11. Passo MH, Taylor J. Quality improvement in pediatric rheumatology: what do we need to do? Curr Opin Rheumatol2008;20:625-30.12. Lovell DJ, Passo MH, Beukelman T, Bowyer SL, Gottlieb BS,Henrickson M, et al. Measuring process of arthritis care. A proposed set of quality measures for the process of care in juvenileidiopathic arthritis. Arthritis Care Res 2011;63:10-6.13. Filocamo G, Consolaro A, Schiappapietra B, Dalprà S, Lattanzi B,Magni-Manzoni S, et al. A new approach to clinical care of juvenileidiopathic arthritis: the Juvenile Arthritis MultidimensionalAssessment Report. J Rheumatol 2011;38:938-53.14. Institute of Medicine (US). Committee on Quality of Healthcare inAmerica. Netlibrary Inc. Crossing the quality chasm: a new healthsystem for the 21st century. Washington, DC: Institute of Medicine:2001.15. Jolles BM, Buchbinder R, Beaton DE. A study compared ninepatient-specific indices for musculoskeletal disorders. J ClinEpidemiol 2005;58:791-801.16. Filocamo G, Sztajnbok F, Cespedes-Cruz A, Magni-Manzoni S,Pistorio A, Viola S, et al. Development and validation of a newshort and simple measure of physical function for juvenile idiopathic arthritis. Arthritis Rheum 2007;57:913-20.17. Filocamo G, Schiappapietra B, Bertamino M, Pistorio A, RupertoN, Magni-Manzoni S, et al. A new short and simple health-relatedquality of life measurement for paediatric rheumatic diseases: initial validation in juvenile idiopathic arthritis. Rheumatology2010;49:1272-80.18. Giannini EH, Ruperto N, Ravelli A, Lovell DJ, Felson DT, MartiniA. Preliminary definition of improvement in juvenile arthritis.Arthritis Rheum 1997;40:1202-9.19. Singh G, Athreya BH, Fries JF, Goldsmith DP. Measurement ofhealth status in children with juvenile rheumatoid arthritis. ArthritisRheum 1994;37:1761-9.20. Varni JW, Seid M, Smith Knight T, Burwinkle T, Brown J, Szer IS.The PedsQL in pediatric rheumatology: reliability, validity, andresponsiveness of the Pediatric Quality of Life Inventory GenericCore Scales and Rheumatology Module. Arthritis Rheum2002;46:714-25.21. Landgraf JM, Abetz L, Ware JE. The CHQ user’s manual. Boston:The Health Institute, New England Medical Center; 1996.22. Duffy CM, Arsenault L, Duffy KN, Paquin JD, Strawczynski H.The Juvenile Arthritis Quality of Life Questionnaire — development of a new responsive index for juvenile rheumatoidarthritis and juvenile spondyloarthritides. J Rheumatol1997;24:738-46.23. Langley GJ, Nolan KM, Norman CL, Provost LP, Nolan TW. Theimprovement guide: A practical approach to enhancing organizational performance. 2nd ed. San Francisco: Jossey-BassBusiness & Management Series; 2009.J Rheumatol 2011;38:789-90; doi:10.3899/jrheum.110047790 The Journal of Rheumatology 2011; 38:5; doi:10.3899/jrheum.110047Personal non-commercial use only. The Journal of Rheumatology Copyright © 2011. All rights reserved. www.jrheum.orgDownloaded on August 8, 2022 from 

Improving the quality of care in children with juvenile idiopathic arthritis: A step in the right direction

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Improving the quality of care in children with juvenile idiopathic arthritis: A step in the right direction

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