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Stacy P Ardoin - One of the best experts on this subject based on the ideXlab platform.

  • quantitative evaluation of a Pediatric Rheumatology transition program
    Pediatric Rheumatology, 2015
    Co-Authors: Stacy P Ardoin, Charles H Spencer, Paul T Jensen, Jill Karnes, Karla Jones, Amy Lehman, Robert M Rennebohm, Gloria C Higgins
    Abstract:

    Background Transition from Pediatric to adult care can be a challenging process which leaves young people vulnerable to interruptions of care and worsening disease status. Efforts to improve transition processes and outcomes have included development of individualized transition plans, creation of transition clinics, and utilization of transition coordinators. Few interventions have assessed transition outcomes quantitatively.

  • Choosing Wisely: the American College of Rheumatology's Top 5 for Pediatric Rheumatology.
    Arthritis Care and Research, 2014
    Co-Authors: Kelly Rouster-stevens, Ashley M. Cooper, Mara L. Becker, Leonard L. Dragone, Karla B. Jones, Karen S. Kolba, L. Nandini Moorthy, Stacy P Ardoin, Anna Huttenlocher, Peter A. Nigrovic
    Abstract:

    OBJECTIVE: To create a Pediatric Rheumatology Top 5 list as part of the American Board of Internal Medicine Foundation's Choosing Wisely campaign. METHODS: Delphi surveys of a core group of representative Pediatric Rheumatology providers from across North America generated candidate Top 5 items. Items with high content agreement and perceived to be of prevalent use and of high impact were included in a survey of all American College of Rheumatology (ACR) members who identified themselves as providing care to Pediatric patients. Items with the highest ratings were subjected to literature review and further evaluation. RESULTS: A total of 121 candidate items were proposed in the initial Delphi survey and were reduced to 28 items in subsequent surveys. These 28 items were sent to 1,198 Rheumatology providers who care for Pediatric patients, and 397 (33%) responded. Based upon survey data and literature review, the Top 5 items were identified. These items focused on testing for antinuclear antibodies, autoantibody panels, Lyme disease, methotrexate toxicity monitoring, and use of routine radiographs. CONCLUSION: The ACR Pediatric Rheumatology Top 5 is one of the first Pediatric subspecialty-specific Choosing Wisely Top 5 lists and provides an opportunity for patients and providers to discuss appropriate use of health care in Pediatric Rheumatology.

  • transitioning youth with rheumatic conditions perspectives of Pediatric Rheumatology providers in the united states and canada
    The Journal of Rheumatology, 2014
    Co-Authors: Peter Chira, Stacy P Ardoin, Tova Ronis, Patience H White
    Abstract:

    Objective. To assess North American Pediatric Rheumatology providers’ perspectives on practices, barriers, and opportunities concerning the transition from Pediatric-centered to adult-centered care. Methods. Childhood Arthritis and Rheumatology Research Alliance (CARRA) members completed a 25-item survey assessing current transition practices, transition policy awareness, and transitional care barriers and needs. Results were compared to the American Academy of Pediatrics (AAP) 2008 survey on transitional care. Results. Over half (158/288, 55%) of CARRA members completed the survey. Fewer than 10% are very familiar with AAP guidelines about transition care for youth with special healthcare needs. Eight percent have a formal written transition policy, but 42% use an informal approach. Patient request (75%) most frequently initiates transfer to adult care. Two major barriers to transition are fragmented adult medical care and lack of sufficient time to provide services. Compared with AAP survey participants, Pediatric Rheumatology providers are significantly more likely to help youth find an adult specialist (63% vs 45%) and discuss confidentiality and consent before age 18 (45% vs 33%), but are less likely to help with medical summary creation (16% vs 27%) or find a primary care provider (25% vs 47%). Outcomes ranked as “very important” in defining a successful transition are survival (76%), seeing an adult rheumatologist within 6 months of final Pediatric Rheumatology visit (66%), and maintaining insurance coverage (57%). Conclusion. This comprehensive survey of North American Pediatric Rheumatology providers regarding transitional care practices demonstrates deficiencies in education, resources, and a formalized process. Respondents support development of standardized Rheumatology-specific transition practices.

  • a151 Pediatric Rheumatology care and outcomes improvement network demonstrates performance improvement on juvenile idiopathic arthritis quality measures
    Arthritis & Rheumatism, 2014
    Co-Authors: Julia G Harris, Stacy P Ardoin, Daniel J Lovell, Judyann C Olson, Esi Morgan Dewitt, Ronald M Laxer, Beth S Gottlieb, Murray H Passo, Jennifer E Weiss, Tzielan C Lee
    Abstract:

    Background/Purpose: Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) is a multi-site learning network designed to improve outcomes of juvenile idiopathic arthritis (JIA) care. Teams collect point of care data on measures of process of care and outcomes of care for the purposes of analysis to guide improvement activities. Eleven North American Pediatric Rheumatology centers participate. This report illustrates our improvement in several JIA process quality measures (QMs). Methods: Process of care QMs targeted for improvement include measurement of: arthritis-related pain, physician global assessment, joint count, health-related quality of life, physical function, as well as screening for uveitis, medication toxicity, and tuberculosis per guidelines. Outcome measures for JIA include clinical inactive disease, clinical remission on and off medications, no or mild pain level, and optimal physical functioning. Network goals were determined for each process and outcome measure. Data are collected with IRB approval and informed consent, and the shared registry for data entry is the ACR's Rheumatology Clinical Registry. Site-specific and aggregate data are analyzed and displayed monthly via statistical process control charts allowing PR-COIN to track performance over time. Individual centers use established quality improvement methodology to reach and exceed pre-determined goals. Results: Data from 5112 encounters for 1134 JIA patients have been collected since April 2011. QMs with performance meeting or exceeding initial goals include documentation of complete joint count and measurement of arthritis-related pain. For PR-COIN network as a collective unit, QMs improved in six processes—measurement of functional ability, completion of ongoing medication toxicity labs, documentation of complete joint count, medication counseling for newly prescribed DMARDs, documentation of annual medication counseling, and measurement of health-related quality of life. All of these measures had a shift above the baseline mean, demonstrating special cause. In addition, five sites have demonstrated individual improvement in at least one process QM. Conclusion: PR-COIN sites are collectively and individually demonstrating significant improvements in JIA process of care QMs. Quality improvement efforts in PR-COIN are ongoing with the goal of improving the outcome for patients with JIA.

  • a180 a population management tool for proactive care of juvenile idiopathic arthritis in the Pediatric Rheumatology care and outcomes improvement network
    Arthritis & Rheumatism, 2014
    Co-Authors: Stacy P Ardoin, Daniel J Lovell, Ronald M Laxer, Beth S Gottlieb, Murray H Passo, Jennifer E Weiss, Tzielan C Lee, April C Bingham, Sheetal S Vora, Nancy Griffith
    Abstract:

    Background/Purpose: The Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) is a multi-center, quality-improvement-focused learning network with a mission of improving outcomes for children and adolescents with juvenile idiopathic arthritis (JIA). PR-COIN has developed a population management tool which facilitates pro-active, coordinated health care communications and interventions that can be used in managing JIA patient populations. Methods: The population management tool was developed with information technology expertise to link seamlessly to the PR-COIN longitudinal registry. Within the population management tool, on demand reports can be generated using participating site or aggregate, network level data according to demographics, clinical features, disease activity levels, patient reported outcomes (functional ability/CHAQ score, arthritis related pain), medication use, and quality indicators. Drill down capability enables identification of patients. Results: Currently, data from 8 sites, 1161 patients, and 5334 clinical encounters are included in the population management tool (Table 1). Individual site usage of the population management tool is variable ranging from infrequent use to regular use at monthly population management meetings. The PR-COIN network is currently developing strategies to promote consistent usage of the tool at sites. Clinicians routinely using information provided through this tool report satisfaction with its functionality and ease of use; furthermore they report enhanced ability to proactively identify and address specific patient needs prior to and during clinic visits, optimizing care. Table 1. Aggregate patient data report from PR-COIN population management tool Characteristic N = 1146 a Per Wallace criteria; b PGA scale 0–10 c CHAQ = 0; d per Hellinghaus guidelines Age (years)   < 2 4 (0.3%) 2–4 84 (7.6%) 5–7 148 (12.9%) 8–12 324 (28.3%) > 12 583 (50.9%) JIA subtype   Oligoarticular persistent 236 (20.6%) Oligoarticular extended 132 (11.5%) Polyarticular, RF negative 396 (34.5%) Polyarticular, RF positive 99 (8.6%) Enthesitis related arthritis 63 (5.5%) Systemic 75 (6.5%) Undifferentiated 25 (2.2%) Disease status   Clinically inactive disease on medicationsa 264 (35.9%) Active uveitis 71 (6.2%) Prior history of uveitis, currently inactive 100 (8.7%) Physician global assessment (PGA) = 0–3b 991 (86.4%) Optimal physical functionc 507 (57.1%) Pain score = 0 482 (42%) Other measures   Compliant with uveitis screening 351 (30.6%) On biologic medication 418 (36.4%) Conclusion: The population management tool allows real-time feedback to sites regarding overall JIA population and individual patient status. Customized, “on demand” population measurement and quality improvement reports generated by the network and participating sites and can be used to identify gaps in patient care and at-risk subpopulations that may benefit from more intensive or between-visit care. Current efforts include developing a care stratification scores that can assist in identifying at risk JIA subpopulations and provision of individual patient reports that can be used to assist in pre-visit planning. Future goals include providing feedback to individual patients about their disease status compared to local and network aggregate data, and customized educational and interventional tools that can be provided to JIA patients and families. Thus, the PR-COIN JIA population management tool can be leveraged to improve JIA network and site performance and individual patient care.

Julia G Harris - One of the best experts on this subject based on the ideXlab platform.

  • identifying targets for improving mental healthcare of adolescents with systemic lupus erythematosus perspectives from Pediatric Rheumatology clinicians in the united states and canada
    The Journal of Rheumatology, 2016
    Co-Authors: Andrea M Knight, Alaina M Davis, Eyal Muscal, Karen Onel, Julia G Harris, Laura E Schanberg, Michelle Vickery, Arzu Soybilgic, Tamar B Rubinstein
    Abstract:

    Objective. To identify targets for improving mental healthcare of adolescents with systemic lupus erythematosus (SLE) by assessing current practices and perceived barriers for mental health intervention by Pediatric Rheumatology clinicians. Methods. Members of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) completed a Web-based survey assessing current mental health practices, beliefs, and barriers. We examined associations between provider characteristics and the frequency of barriers to mental health screening and treatment using multivariable linear regression. Results. Of the 375 eligible CARRA members, 130 responded (35%) and 119 completed the survey. Fifty-two percent described identification of depression/anxiety in adolescents with SLE at their practice as inadequate, and 45% described treatment as inadequate. Seventy-seven percent stated that routine screening for depression/anxiety in Pediatric Rheumatology should be conducted, but only 2% routinely used a standardized instrument. Limited staff resources and time were the most frequent barriers to screening. Respondents with formal postgraduate mental health training, experience treating young adults, and practicing at sites with very accessible mental health staff, in urban locations, and in Canada reported fewer barriers to screening. Long waitlists and limited availability of mental health providers were the most frequent barriers to treatment. Male clinicians and those practicing in the Midwest and Canada reported fewer barriers to treatment. Conclusion. Pediatric Rheumatology clinicians perceive a need for improved mental healthcare of adolescents with SLE. Potential strategies to overcome barriers include enhanced mental health training for Pediatric rheumatologists, standardized Rheumatology-based mental health practices, and better integration of medical and mental health services.

  • improving pneumococcal vaccination in Pediatric Rheumatology patients
    Pediatrics, 2015
    Co-Authors: Julia G Harris, Kristyn Maletta, Bixiang Ren, Judyann C Olson
    Abstract:

    BACKGROUND AND OBJECTIVE: Many Pediatric Rheumatology patients are at increased risk of pneumococcal disease secondary to a deficient immune system and/or immunosuppressive medications. The goal of this study was to improve pneumococcal vaccination rates in this high-risk population. METHODS: Eligible patients included children at least 2 years old and adults with systemic lupus erythematosus and/or currently on immunosuppressive medication. Interventions included a presentation to Rheumatology providers, creation of immunization algorithm, previsit planning, placing reminders on clinic forms, and sending reminder e-mails to providers. Chart reviews were performed, and control charts were established to portray change in immunization rates. RESULTS: The preintervention immunization rates for 90 patient visits compared with the immunization rates for the 53-week postintervention period with 1033 patient visits and 299 separate patients were all statistically significant. The 13-valent pneumococcal conjugate vaccine rate increased from 6.7% to 48.4% (χ 2 = 58.3, P 2 = 16.0, P 2 = 25.2, P CONCLUSIONS: Pneumococcal vaccination is an important part of the care for systemic lupus erythematosus patients and patients on immunosuppressive medications. Simple interventions through this quality improvement project led to a marked increase in pneumococcal vaccination rates in this vulnerable population.

  • a151 Pediatric Rheumatology care and outcomes improvement network demonstrates performance improvement on juvenile idiopathic arthritis quality measures
    Arthritis & Rheumatism, 2014
    Co-Authors: Julia G Harris, Stacy P Ardoin, Daniel J Lovell, Judyann C Olson, Esi Morgan Dewitt, Ronald M Laxer, Beth S Gottlieb, Murray H Passo, Jennifer E Weiss, Tzielan C Lee
    Abstract:

    Background/Purpose: Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) is a multi-site learning network designed to improve outcomes of juvenile idiopathic arthritis (JIA) care. Teams collect point of care data on measures of process of care and outcomes of care for the purposes of analysis to guide improvement activities. Eleven North American Pediatric Rheumatology centers participate. This report illustrates our improvement in several JIA process quality measures (QMs). Methods: Process of care QMs targeted for improvement include measurement of: arthritis-related pain, physician global assessment, joint count, health-related quality of life, physical function, as well as screening for uveitis, medication toxicity, and tuberculosis per guidelines. Outcome measures for JIA include clinical inactive disease, clinical remission on and off medications, no or mild pain level, and optimal physical functioning. Network goals were determined for each process and outcome measure. Data are collected with IRB approval and informed consent, and the shared registry for data entry is the ACR's Rheumatology Clinical Registry. Site-specific and aggregate data are analyzed and displayed monthly via statistical process control charts allowing PR-COIN to track performance over time. Individual centers use established quality improvement methodology to reach and exceed pre-determined goals. Results: Data from 5112 encounters for 1134 JIA patients have been collected since April 2011. QMs with performance meeting or exceeding initial goals include documentation of complete joint count and measurement of arthritis-related pain. For PR-COIN network as a collective unit, QMs improved in six processes—measurement of functional ability, completion of ongoing medication toxicity labs, documentation of complete joint count, medication counseling for newly prescribed DMARDs, documentation of annual medication counseling, and measurement of health-related quality of life. All of these measures had a shift above the baseline mean, demonstrating special cause. In addition, five sites have demonstrated individual improvement in at least one process QM. Conclusion: PR-COIN sites are collectively and individually demonstrating significant improvements in JIA process of care QMs. Quality improvement efforts in PR-COIN are ongoing with the goal of improving the outcome for patients with JIA.

Gerd Horneff - One of the best experts on this subject based on the ideXlab platform.

  • risk of serious infection in juvenile idiopathic arthritis patients associated with tumor necrosis factor inhibitors and disease activity in the german biologics in Pediatric Rheumatology registry
    Arthritis Care and Research, 2017
    Co-Authors: Ingrid Becker, Gerd Horneff
    Abstract:

    Objective To examine the effects of tumor necrosis factor inhibitors on the risk for serious infections and other influencing factors in a registry. Methods Patients exposed for the first time to etanercept, adalimumab, or methotrexate and serious infections were identified in the German Biologic Registry for Pediatric Rheumatology (BIKER) registry. Serious infection rates per 1,000 observation-years and relative risks were calculated. Cox regression identified risk factors and provided hazard ratios (HRs) for occurrence of infections. Results A total of 3,350 patients with 5,919 observation-years fulfilled the inclusion criteria for the study. The first biologic agents were etanercept (1,720 cases) and adalimumab (177 cases). A total of 1,453 patients were treated with methotrexate and no biologic agent. In total, 28 serious infections were reported in 26 patients (4.7 per 1,000 patient-years), 5 with methotrexate (1.6 per 1,000 patient-years), 21 with etanercept (8.1 per 1,000 patient-years), and 2 with adalimumab (9.7 per 1,000 patient-years). Significant univariate risk factors for infection were therapy with biologic agents, disease duration before therapy start, corticosteroid medication, nonbiologic premedications, higher clinical Juvenile Arthritis Disease Activity Score including maximal 10 joints (cJADAS10) at therapy start, and higher mean cJADAS10 during therapy. In multivariate Cox regression, only biologic therapy and cJADAS10 at therapy start remained significant. Risk for infection was increased by etanercept (univariate HR 6.0 [95% confidence interval (95% CI) 2.0–17.5]) or adalimumab (HR 7.3 [95% CI 1.3–40.0]) compared to methotrexate as well as by an elevated cJADAS10 at therapy start (HR 1.1 [95% CI 1.0–1.2] per unit increase). Conclusion The total rate of serious infections reported in the BIKER registry seems low. Treatment with etanercept or adalimumab increases the risk for serious infection slightly, compared to methotrexate. Disease activity expressed by cJADAS10 appears to be an independent risk factor.

  • uveitis events during adalimumab etanercept and methotrexate therapy in juvenile idiopathic arthritis data from the biologics in Pediatric Rheumatology registry
    Arthritis Care and Research, 2015
    Co-Authors: Ivan Foeldvari, Ingrid Becker, Gerd Horneff
    Abstract:

    Objective Uveitis is a major extraarticular quality of life–restricting manifestation of juvenile idiopathic arthritis (JIA). The aim of the study is to describe the occurrence of uveitis in JIA patients receiving tumor necrosis factor inhibitors or methotrexate (MTX). Methods Patients’ characteristics, treatment, and the reported first occurrence of uveitis as an adverse event were searched in the Biologics in Pediatric Rheumatology Registry. The rates per exposed patients, exposure time, and time until event were calculated. Results Uveitis was reported as an adverse event in 75 of 3,467 patients; 51 of 2,844 patients were receiving MTX, 37 of 1,700 patients were receiving etanercept, and 13 of 364 patients were receiving adalimumab. Patients with uveitis were younger (mean ± SD age 4.6 ± 4.2 versus 7.4 ± 4.5 years; P < 0.0001), more likely to be antinuclear antibody positive (69% versus 43%; odds ratio [OR] 2.7, P < 0.0001), and had extended oligoarticular JIA (OR 2.2, P = 0.0005). Patients with a uveitis diagnosis before starting treatment more often had a uveitis event (n = 28, 8.4%; OR 8.5, P < 0.0001), and more often received adalimumab (OR 2.15 [95% confidence interval 1.58–2.94], P < 0.0001). In 16 patients, a new uveitis event occurred: 11 while taking MTX (3.2 per 1,000 patient-years), 2 while taking etanercept monotherapy (1.9 per 1,000 patient-years), and 3 while taking etanercept and MTX combination (0.9 per 1,000 patient-years). A new uveitis event occurred early in the disease course after a median disease duration of 1.5 years (interquartile range [IQR] 1.3–3.8) while taking etanercept and 1.8 years (IQR 1.8–2.1) for the MTX cohort. A recurrent uveitis event was reported after a disease duration of 7.6 years (IQR 4.3–10.0) in the etanercept cohort and 4.8 years (IQR 1.0–5.8) in the MTX cohort. Univariate analysis showed that MTX, but not etanercept or adalimumab, led to a lower rate of uveitis. Conclusion Patients with a history of uveitis had higher risks for uveitis events while taking both etanercept and adalimumab. Methotrexate turned out to be protective. Few patients developed a first uveitis event while taking etanercept, while the rate is comparable to that with MTX. Uveitis may not be attributed to be an adverse drug reaction to etanercept.

  • Biologic-Associated Infections in Pediatric Rheumatology
    Current Rheumatology Reports, 2015
    Co-Authors: Gerd Horneff
    Abstract:

    During the past 15 years, biologics for juvenile idiopathic arthritis (JIA) therapy has led to new options. However, despite the high effectiveness and safety profile of these agents, infections are of great concern. The risk for bacterial infections, which appears to be increased in JIA patients as a result of the disease itself, seems to be increased further by antirheumatic treatment. Combining data from several sources, infection rates appear to be comparable for abatacept (1.33/100 person-years (PY); 95 % confidence interval (CI) = 0.50–2.48), adalimumab (1.42/100 PY; 1.01–1.99), and etanercept (1.28/100 PY; 1.06–1.55); higher with golimumab (3.03/100 PY; 1.26–7.29) and infliximab (3.42/100 PY; 1.71–6.84); and even higher with tocilizumab (8.62/100 PY; 6.69–11.10). The rate of serious infection was lowest with methotrexate (0.67/100 PY; 0.48–0.93). In patient cohorts treated with methotrexate without a biologic as a comparator, risk ratios for serious infections were significantly increased for all biologics, except abatacept, because of insignificant patient numbers. Opportunistic infections, including tuberculosis, were very rare. Herpes zoster was the only specific infection occurring frequently throughout the studies. Thus, the safety profiles of approved biologics are highly acceptable. Although this conclusion is based on limited experience and is not easily expanded to the interleukin (IL)-1 inhibitor canakinumab or the T cell activation inhibitor abatacept, both these agents have demonstrated an excellent safety profile so far.

  • Evidence-based use of methotrexate in children with rheumatic diseases: a consensus statement of the Working Groups Pediatric Rheumatology Germany (AGKJR) and Pediatric Rheumatology Austria
    Rheumatology International, 2005
    Co-Authors: Tim Niehues, Gerd Horneff, Hartmut Michels, Michaela Sailer Höck, Lothar Schuchmann
    Abstract:

    Juvenile idiopathic arthritis (JIA) is the most common diagnosis in children and adolescents with rheumatic disorders. In many children and adolescents, JIA is successfully treated with non-steroidal anti-inflammatory drugs (NSAID) and physiotherapy. However, in a significant number of cases the disease is resistant to this therapy, and treatment with “second line” disease-modifying antirheumatic drugs (DMARDs) is required. Methotrexate (MTX) is frequently referred to as “first-choice second-line agent” for the treatment of JIA. To increase drug safety, the Working Groups for Children and Adolescents with Rheumatic Diseases in Germany (AGKJR) and Pediatric Rheumatology Austria have initiated the formulation of evidence-based recommendations. Evidence is based on consensus expert meetings, a MEDLINE search with the key words “Methotrexate” and “juvenile arthritis” limited to age 0–18 years, standard textbooks and review articles, data from the central registry of the German Research Center for Rheumatic Diseases (Deutsches Rheumaforschungszentrum Berlin DRFZ), experience with MTX in adults with rheumatoid arthritis (RA), and recommendations of the German Society of Rheumatology (DGRh). Based on these data, evidence and recommendations are graded, and evidence-based recommendations for the use of MTX in children and adolescents with rheumatic disease are presented.

Marisa S Kleingitelman - One of the best experts on this subject based on the ideXlab platform.

  • 2015 american college of Rheumatology workforce study and demand projections of Pediatric Rheumatology workforce 2015 2030
    Arthritis Care and Research, 2020
    Co-Authors: Colleen K Correll, Marisa S Kleingitelman, Marcia M Ditmyer, Jay J Mehta, Lisa Imundo, Seetha U Monrad, Daniel F Battafarano
    Abstract:

    OBJECTIVE Describe the character and composition of the 2015 Pediatric Rheumatology workforce in the United States (US), evaluate current workforce trends, and project future supply and demand of Pediatric Rheumatology workforce through 2030. METHODS The American College of Rheumatology (ACR) created the Workforce Study Group (WSG) to study the Rheumatology workforce. The WSG used primary and secondary data to create a representative workforce model. Pediatric Rheumatology supply and demand was projected through 2030 using an integrated data-driven framework to capture a more realistic clinical full-time equivalent (FTE) and produce a better picture of access to care issues in Pediatric Rheumatology. RESULTS The 2015 Pediatric workforce was estimated at 287 FTE (300 providers), while the estimated excess demand was 95 (33%). The projected demand will continue to increase to almost 100% (N=230) by 2030 if no changes occur in succession planning, new graduate entrants into the profession, and other factors associated with the workforce. CONCLUSION This study projects that the Pediatric Rheumatology workforce gap will continue to worsen significantly from the 2015 baseline, and by 2030 the demand for Pediatric rheumatologists will be twice the supply. Innovative strategies are needed to increase the workforce supply and to improve access to care.

  • efficacy of an interinstitutional mentoring program within Pediatric Rheumatology
    Arthritis Care and Research, 2016
    Co-Authors: Lakshmi N Moorthy, Eyal Muscal, Meredith P Riebschleger, Marisa S Kleingitelman, Lise E Nigrovic, Jeffrey R Horon, Kelly Rousterstevens, Polly J Ferguson, Anne B Eberhard, Hermine I Brunner
    Abstract:

    Objective The small size of many Pediatric Rheumatology programs translates into limited mentoring options for early career physicians. To address this problem, the American College of Rheumatology (ACR) and the Childhood Arthritis and Rheumatology Research Alliance (CARRA) developed a subspecialty-wide interinstitutional mentoring program, the ACR/CARRA Mentoring Interest Group (AMIGO). We sought to assess the impact of this program on mentoring within Pediatric Rheumatology. Methods In a longitudinal 3-year study, participant ratings from the AMIGO pilot program were compared with those after the program was opened to general enrollment. Access to mentoring as a function of career stage was assessed by surveys of the US and Canadian Pediatric rheumatologists in 2011 and 2014, before and after implementation of AMIGO. Results Participants in the pilot phase (19 dyads) and the general implementation phase (112 dyads) reported comparable success in establishing mentor contact, suitability of mentor-mentee pairing, and benefit with respect to career development, scholarship, and work-life balance. Community surveys showed that AMIGO participation as mentee was high among fellows (86%) and modest among junior faculty (31%). Implementation correlated with significant gains in breadth of mentorship and in overall satisfaction with mentoring for fellows but not junior faculty. Conclusion AMIGO is a career mentoring program that serves most fellows and many junior faculty in Pediatric Rheumatology across the US and Canada. Program evaluation data confirm that a subspecialty-wide interinstitutional mentoring program is feasible and can translate into concrete improvement in mentoring, measurable at the level of the whole professional community.

  • a177 program evaluation of the acr carra inter institutional mentoring program amigo in Pediatric Rheumatology
    Arthritis & Rheumatism, 2014
    Co-Authors: Eyal Muscal, Anna Huttenlocher, Rayfel Schneider, Lakshmi N Moorthy, Meredith P Riebschleger, Anne Eberhard, Marisa S Kleingitelman, Sampath Prahalad, Kelly Rouster Stevens, Peter A. Nigrovic
    Abstract:

    Background/Purpose: In Pediatric Rheumatology, the small size of many academic programs translates into limited mentoring options for early career physicians. To address this “mentorship gap,” in 2011 the American College of Rheumatology (ACR) and the Childhood Arthritis and Rheumatology Research Alliance (CARRA) joined together to develop AMIGO, the ACR/CARRA Mentoring Interest Group, that now includes greater than half of Pediatric Rheumatology fellows and junior faculty in the US and Canada. We report ongoing program evaluation encompassing pilot (2011) and full roll-out (2012, 2013) phases of the AMIGO project. Methods: Mentees and mentors participating in the AMIGO project were surveyed via online questionnaire to determine dynamics of contact and perceived benefit. The entire Pediatric Rheumatology community was surveyed in 2011 to determine the state of mentoring and career development, with a repeat survey planned for early 2014. We tabulated the active dyads as of January 2014. Results: As recently reported, detailed evaluation of the pilot phase 17 months after initial roll-out found that 19 of 20 pilot AMIGO dyads were still functioning, with substantial benefit noted by mentees in career guidance, scholarship, and job satisfaction. Benefits reported by mentors included improvement of their mentoring skills and development of their academic portfolios. Both mentees and mentors reported improved connectedness to the wider Pediatric Rheumatology community. 83 additional dyads were matched prior to 2012 and 2013 ACR meetings. Comparison of these 17-month pilot results to a December 2013/January 2014 survey of all active AMIGO participants is ongoing. A questionnaire administered to the whole Pediatric Rheumatology community in 2011 (n = 135 respondents, including an estimated 64–70% response rate among fellows and junior faculty) found that approximately 60% of fellows and junior faculty had a career development mentor. We will assess whether the AMIGO program has had a global impact upon the mentoring culture in Pediatric Rheumatology by collecting community-wide survey data in 2014 and then comparing to 2011 data. Conclusion: The 2011 AMIGO pilot program has confirmed the feasibility of a North American inter-institutional mentoring program in Pediatric Rheumatology. Participants identified benefits to both mentees and mentors in multiple domains, most prominently in career guidance, a core goal of the program. Ongoing program evaluation will determine how much of this benefit has been sustained after participation was opened to the whole community, and whether the program has had a measureable impact on the overall state of mentoring in Pediatric Rheumatology.

  • corticosteroid use in childhood onset systemic lupus erythematosus practice patterns at four Pediatric Rheumatology centers
    Clinical and Experimental Rheumatology, 2009
    Co-Authors: Hermine I Brunner, Lori B Tucker, Marisa S Kleingitelman, Jun Ying, Earl D Silverman
    Abstract:

    OBJECTIVE To evaluate corticosteroid prescribing patterns in childhood-onset systemic lupus erythematosus (SLE), comparing four academic Pediatric Rheumatology practices. METHODS Patients with childhood-onset SLE (n=72) treated at four large Pediatric Rheumatology centers were studied at 3-month intervals for 18 months. Information on medication use, disease activity as measured by the SLEDAI and the SLAM; and disease damage by the SLICC/ACR Damage Index was collected. RESULTS At the time of enrollment, patients at each center were similar for disease duration, age, frequency of renal involvement and disease damage. Prednisone (mean 9 mg/day) was continued during 72% of periods of inactive disease for at least 3 months (SLEDAI=0). Centers differed in the use of intravenous pulse methylprednisolone (p<0.0001). Even when adjusted for between-center differences in patient weight, race and disease activity, centers also significantly differed in the dose of prednisone (p<0.05). The center with the largest between-patient variability in the dose of prednisone prescribed to its patients showed the smallest between-patient variance in patient disease activity. CONCLUSIONS Corticosteroids are commonly used for the treatment of childhood-onset SLE, even when the disease is inactive. There appears to be important between-center differences in the use of intravenous and oral corticosteroids for childhood-onset SLE therapy that cannot be explained by patient disease activity corticosteroid prescribing patterns influence disease control. Further studies are needed to determine whether differences in practice patterns lead to significant differences in longer-term disease outcomes with childhood-onset SLE.

Beth S Gottlieb - One of the best experts on this subject based on the ideXlab platform.

  • fri0550 jia disease activity outcomes across a multi center cohort analysis of the Pediatric Rheumatology care and outcomes improvement network pr coin registry
    Annals of the Rheumatic Diseases, 2019
    Co-Authors: Emily A Smitherman, Ronald M Laxer, Beth S Gottlieb, Jennifer E Weiss, Bin Huang, April C Bingham, Cagri Yildirimtoruner, Tzielan Lee, Sheetal S Vora, Jon M Burnham
    Abstract:

    Background Clinical remission is widely accepted as the primary target outcome for juvenile idiopathic arthritis (JIA). PR-COIN is a quality improvement collaborative that serves as a sample of Pediatric Rheumatology centers in North America. By measuring disease activity in practice using the ACR provisional criteria for Clinical Inactive Disease (CID), variation in patient outcomes has been previously observed between centers. Objectives The objective of this study was to evaluate differences in patient-level factors that may be driving center-level variation in JIA outcomes. Methods This study used cross-sectional data provided by PR-COIN that was collected by PR-COIN centers from March 2015 to May 2016. For each patient, sociodemographic, clinical, patient-reported, disease activity, and medication variables were extracted from the most recent encounter. Patients with disease duration less than 9 months were excluded. Patients were grouped by CID status (inactive vs active disease) and then compared using descriptive statistics, chi-square for categorical variables, and independent t-tests for continuous variables. Missing data were excluded with each analysis. Analyses were performed using R software. Results There were 2751 patients eligible for analysis from 14 centers, with 33 to 394 patients per center. We identified 1249 patients with inactive disease (47%) and 1428 patients with active disease (53%). Patients with inactive disease were younger (12 vs 13 years), more likely to have persistent oligoarticular subtype (33% vs 23%), and less likely to have enthesitis related arthritis (9% vs 14%). Patients with active disease had higher patient-reported measures of global assessment of disease activity, pain, and functional disability, as well as disease activity measures per definition. More medication usage was observed in patients with active disease compared to inactive disease across multiple categories, including both non-biologic DMARDs (45% vs. 32%) and biologic DMARDs (48% vs 35%). Conclusion This study demonstrates differences in sociodemographic, clinical, and medication factors between patients with inactive and active JIA. Further analysis is needed to adjust center-level measures of JIA disease activity using the observed differences in patient case-mix. By using population data to identify predictors of inactive disease in JIA, there is potential to develop and implement targeted clinical interventions to directly impact care and improve outcomes. Disclosure of Interests: Emily A. Smitherman: None declared, Bin Huang: None declared, Ronald Laxer Consultant for: Eli Lilly Canada, Alexion, Sanofi, C. April Bingham: None declared, Cagri Yildirim-Toruner: None declared, Beth Gottlieb: None declared, Jennifer E. Weiss: None declared, Tzielan Lee: None declared, Sheetal Vora: None declared, Jon (Sandy) Burnham: None declared, Julia G. Harris: None declared, Judyann C. Olson: None declared, Mileka Gilbert: None declared, Michelle Batthish Speakers bureau: Novartis, Abbvie, Michael Shishov: None declared, Dustin Fleck: None declared, Esi Morgan: None declared

  • a151 Pediatric Rheumatology care and outcomes improvement network demonstrates performance improvement on juvenile idiopathic arthritis quality measures
    Arthritis & Rheumatism, 2014
    Co-Authors: Julia G Harris, Stacy P Ardoin, Daniel J Lovell, Judyann C Olson, Esi Morgan Dewitt, Ronald M Laxer, Beth S Gottlieb, Murray H Passo, Jennifer E Weiss, Tzielan C Lee
    Abstract:

    Background/Purpose: Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) is a multi-site learning network designed to improve outcomes of juvenile idiopathic arthritis (JIA) care. Teams collect point of care data on measures of process of care and outcomes of care for the purposes of analysis to guide improvement activities. Eleven North American Pediatric Rheumatology centers participate. This report illustrates our improvement in several JIA process quality measures (QMs). Methods: Process of care QMs targeted for improvement include measurement of: arthritis-related pain, physician global assessment, joint count, health-related quality of life, physical function, as well as screening for uveitis, medication toxicity, and tuberculosis per guidelines. Outcome measures for JIA include clinical inactive disease, clinical remission on and off medications, no or mild pain level, and optimal physical functioning. Network goals were determined for each process and outcome measure. Data are collected with IRB approval and informed consent, and the shared registry for data entry is the ACR's Rheumatology Clinical Registry. Site-specific and aggregate data are analyzed and displayed monthly via statistical process control charts allowing PR-COIN to track performance over time. Individual centers use established quality improvement methodology to reach and exceed pre-determined goals. Results: Data from 5112 encounters for 1134 JIA patients have been collected since April 2011. QMs with performance meeting or exceeding initial goals include documentation of complete joint count and measurement of arthritis-related pain. For PR-COIN network as a collective unit, QMs improved in six processes—measurement of functional ability, completion of ongoing medication toxicity labs, documentation of complete joint count, medication counseling for newly prescribed DMARDs, documentation of annual medication counseling, and measurement of health-related quality of life. All of these measures had a shift above the baseline mean, demonstrating special cause. In addition, five sites have demonstrated individual improvement in at least one process QM. Conclusion: PR-COIN sites are collectively and individually demonstrating significant improvements in JIA process of care QMs. Quality improvement efforts in PR-COIN are ongoing with the goal of improving the outcome for patients with JIA.

  • a147 engaging patients and families in the Pediatric Rheumatology care and outcomes improvement network
    Arthritis & Rheumatism, 2014
    Co-Authors: Esi Morgan Dewitt, Karla B. Jones, Ronald M Laxer, Beth S Gottlieb, Kay Fricke, Lindsey Bergheger, Nancy Griffin, Janalee Taylor, Catherine C Mims, Lisa M Robbins
    Abstract:

    Background/Purpose: The Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) is a multi-site quality improvement learning network that aims to improve outcomes for children and adolescents with juvenile idiopathic arthritis. In addition to addressing variations in care practices, PR-COIN has incorporated guidance and tangible contributions from patients and families to its national organizational and governance structure to drive improvement in JIA outcomes. PR-COIN aims to grow this initiative to bring care providers, patients and family members together as co-producers in improving care and outcomes. Methods: Various methods supporting family engagement are employed. PR-COIN teams invite interested parents at their respective clinical sites to bring the parent perspective and priorities into local improvement work. To assure a reliable structure, a parent engagement specialist was employed to develop a platform for bringing families and care providers together. National conference calls facilitated by the specialist establish relationships across site representatives and begin goal setting for this group. Parents contribute to shared decision making project efforts. PR-COIN's public website encourages family awareness and involvement in the network's improvement efforts. Results: 7 of 11 sites have welcomed parent contributions to their improvement efforts (e.g. focus groups, advisory activities, etc.). Parents and patients have participated in PR-COIN's biannual conferences, sharing the family perspective and needs associated with JIA care. One parent brings a unique background and skillset as both a Pediatrician with QI experience and the parent of a teen with JIA. This distinction prompted appointment to PR-COIN's governing body. We incorporate patient perspectives into clinic process improvements (e.g. pain management, optimizing physical functioning), enhanced and refined PR-COIN's Shared Decision Making tool, supporting stronger, more informed medication choice, and are developing best practices optimizing use of these materials in clinic. Finally our engaged parents are encouraging others to contribute ideas supportive of PR-COIN structure, growth, strategy and improvement efforts. Conclusion: Parents and patients bring unique talents, insight and skills to the operation of quality improvement networks making efforts more relevant to the self-identified needs of JIA families.

  • a180 a population management tool for proactive care of juvenile idiopathic arthritis in the Pediatric Rheumatology care and outcomes improvement network
    Arthritis & Rheumatism, 2014
    Co-Authors: Stacy P Ardoin, Daniel J Lovell, Ronald M Laxer, Beth S Gottlieb, Murray H Passo, Jennifer E Weiss, Tzielan C Lee, April C Bingham, Sheetal S Vora, Nancy Griffith
    Abstract:

    Background/Purpose: The Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) is a multi-center, quality-improvement-focused learning network with a mission of improving outcomes for children and adolescents with juvenile idiopathic arthritis (JIA). PR-COIN has developed a population management tool which facilitates pro-active, coordinated health care communications and interventions that can be used in managing JIA patient populations. Methods: The population management tool was developed with information technology expertise to link seamlessly to the PR-COIN longitudinal registry. Within the population management tool, on demand reports can be generated using participating site or aggregate, network level data according to demographics, clinical features, disease activity levels, patient reported outcomes (functional ability/CHAQ score, arthritis related pain), medication use, and quality indicators. Drill down capability enables identification of patients. Results: Currently, data from 8 sites, 1161 patients, and 5334 clinical encounters are included in the population management tool (Table 1). Individual site usage of the population management tool is variable ranging from infrequent use to regular use at monthly population management meetings. The PR-COIN network is currently developing strategies to promote consistent usage of the tool at sites. Clinicians routinely using information provided through this tool report satisfaction with its functionality and ease of use; furthermore they report enhanced ability to proactively identify and address specific patient needs prior to and during clinic visits, optimizing care. Table 1. Aggregate patient data report from PR-COIN population management tool Characteristic N = 1146 a Per Wallace criteria; b PGA scale 0–10 c CHAQ = 0; d per Hellinghaus guidelines Age (years)   < 2 4 (0.3%) 2–4 84 (7.6%) 5–7 148 (12.9%) 8–12 324 (28.3%) > 12 583 (50.9%) JIA subtype   Oligoarticular persistent 236 (20.6%) Oligoarticular extended 132 (11.5%) Polyarticular, RF negative 396 (34.5%) Polyarticular, RF positive 99 (8.6%) Enthesitis related arthritis 63 (5.5%) Systemic 75 (6.5%) Undifferentiated 25 (2.2%) Disease status   Clinically inactive disease on medicationsa 264 (35.9%) Active uveitis 71 (6.2%) Prior history of uveitis, currently inactive 100 (8.7%) Physician global assessment (PGA) = 0–3b 991 (86.4%) Optimal physical functionc 507 (57.1%) Pain score = 0 482 (42%) Other measures   Compliant with uveitis screening 351 (30.6%) On biologic medication 418 (36.4%) Conclusion: The population management tool allows real-time feedback to sites regarding overall JIA population and individual patient status. Customized, “on demand” population measurement and quality improvement reports generated by the network and participating sites and can be used to identify gaps in patient care and at-risk subpopulations that may benefit from more intensive or between-visit care. Current efforts include developing a care stratification scores that can assist in identifying at risk JIA subpopulations and provision of individual patient reports that can be used to assist in pre-visit planning. Future goals include providing feedback to individual patients about their disease status compared to local and network aggregate data, and customized educational and interventional tools that can be provided to JIA patients and families. Thus, the PR-COIN JIA population management tool can be leveraged to improve JIA network and site performance and individual patient care.

  • a1 clinical inactive disease in the Pediatric Rheumatology care and outcomes improvement network cohort which components of clinical inactive disease do patients not achieve
    Arthritis & Rheumatism, 2014
    Co-Authors: Catherine A Bingham, Stacy P Ardoin, Daniel J Lovell, Judyann C Olson, Ronald M Laxer, Murray H Passo, Jennifer E Weiss, Sheetal S Vora, Lynn Darbie, Beth S Gottlieb
    Abstract:

    Background/Purpose: The American College of Rheumatology (ACR) provisional criteria for Clinical Inactive Disease (CID) are an accepted outcome measure for juvenile idiopathic arthritis (JIA) patients ([1]). The purpose of this study is to determine what components of CID are not met by Pediatric Rheumatology Care and Outcomes Improvement Network (PR–COIN) patients. The goal is to better understand the ways in which patients are not doing well. We hypothesize that many patients who do not meet CID have mild disease activity such as joint count <3, physician global assessment of disease activity score of <3, or short duration of morning stiffness, but otherwise would fulfill CID. Methods: PR-COIN is a multi-center quality improvement learning network comprised of 11 sites in North America whose mission is to improve outcomes for children with JIA. With IRB consent, patient data are entered into the ACR's Rheumatology Clinical Registry. The criteria for CID include the following: no joints with active arthritis, no systemic features, no active uveitis, normal ESR or CRP (if measured), physician global assessment of disease activity of 0, and duration of morning stiffness < 15 min ([1]). Data were analyzed to determine which components of CID patients do not achieve. Only patients with complete data such that CID status could be calculated were included. Results: Data from 658 individual patients were analyzed. Sixty-one percent of patients did not achieve clinical inactive disease at their most recent visit (404/ 658 patients). The top 3 components of clinical inactive disease that patients did not meet, from most frequent to least frequent, were physician global assessment (91%), joint count (66%), and duration of morning stiffness (28%). Of the patients with active disease, sixteen percent had elevated ESR or CRP (inflammatory markers were not measured in all patients), 11% had active uveitis, and <1% had active systemic JIA features. Sixty-two percent of patients with active disease had a joint count <3, physician global assessment <3, and duration of morning stiffness < 30 minutes, perhaps indicating this was a subset of patients with mild disease activity. This represents 38% of the total population. Thus, 77% of PR-COIN patients had clinical inactive disease or mild disease. Seven percent had active uveitis. Conclusion: Although only 39% of patients achieve CID at their most recent visit in the PR-COIN cohort, and this falls short of our desired outcome, many of these patients with active disease appear to have only mild disease activity. Therefore, the ACR criteria for CID may be somewhat stringent and difficult to achieve in the clinical setting. CID being a binary “all or none” outcome measure makes it difficult to detect whether quality improvement activities are having any beneficial incremental impact on patient disease status. PR-COIN will continue to seek ways to improve rates of CID.