Julia G. Harris

Initial Benchmarking of the Quality of Medical Care in Childhood-Onset Systemic Lupus Erythematosus.

To assess the quality of medical care in childhood‐onset systemic lupus erythematosus (SLE) at tertiary pediatric rheumatology centers as measured by observance of SLE quality indicators (SLE‐QIs).

Identifying Targets for Improving Mental Healthcare of Adolescents with Systemic Lupus Erythematosus: Perspectives from Pediatric Rheumatology Clinicians in the United States and Canada

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 care delivery and outcomes in pediatric rheumatic diseases.

Purpose of reviewThis article highlights efforts in pediatric rheumatology related to optimizing the care provided to patients with pediatric rheumatic diseases and describes various approaches to improve health outcomes. Recent findingsRecent studies report low rates of remission, frequent occurrence of comorbidities, disease damage, and decreased health-related quality of life in pediatric rheumatic diseases. The Pediatric Rheumatology Care and Outcomes Improvement Network is a quality improvement learning network that has demonstrated improvement in the process of care measures through use of a centralized patient registry, and interventions, including previsit planning, population management, shared decision making, and patient/parent engagement. A pediatric rheumatology patient-powered research network was established to enable patient and caregiver participation in setting research priorities and to facilitate data sharing to answer research questions. Quality measure development and benchmarking are proceeding in multiple pediatric rheumatic diseases. SummaryThe review summarizes the current efforts to improve care delivery and outcomes in pediatric rheumatic diseases through a learning health system approach that harnesses knowledge from the clinical encounter to serve quality improvement, research, and discovery. Incorporating standard approaches to medication treatment plans may reduce variation in care, including using the patient voice to design research studies to bring focus on more patient relevant outcomes. Video abstracthttp://links.lww.com/COR/A28.

Improving Pneumococcal Vaccination in Pediatric Rheumatology Patients

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% (χ2 = 58.3, P < .001), 23-valent pneumococcal polysaccharide vaccine rate increased from 8.9% to 28.4% (χ2 = 16.0, P < .001), and combined rate increased from 0% to 23.2% (χ2 = 25.2, P < .001). The improvement was sustained with shifts in the data for each vaccine and combined immunizations for final average rates of 60.9% for 13-valent pneumococcal conjugate vaccine, 39.2% for 23-valent pneumococcal polysaccharide vaccine, and 33.7% for combined. 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.

Barriers to Adherence in Juvenile Idiopathic Arthritis: A Multicenter Collaborative Experience and Preliminary Results

Objective. Nonadherence is currently an underrecognized and potentially modifiable obstacle to care in juvenile idiopathic arthritis (JIA). The purpose of our study was to design and implement a standardized approach to identifying adherence barriers for youth with JIA across 7 pediatric rheumatology clinics through the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) and to assess the frequency of adherence barriers in patients and their caregivers across treatment modalities. Methods. An iterative process using coproduction among parents and providers of patients with JIA was used to design the Barriers Assessment Tool to screen for adherence barriers across 4 treatment modalities (i.e., oral medications, injectable medications, infusions, and physical/occupational therapy). This tool was implemented in 7 rheumatology clinics across the United States and patient responses were collected for analysis. Results. Data were collected from 578 parents and 99 patients (n = 44 parent-child dyads). Seventy-seven percent (n = 444) of caregivers and 70% (n = 69) of patients reported at least 1 adherence barrier across all treatment components. The most commonly reported adherence barriers included worry about future consequences of therapy, pain, forgetting, side effects, and embarrassment related to the therapy. There was no significant difference between endorsement of barriers between parents and adolescents. Conclusion. Implementing a standardized tool assessing adherence barriers in the JIA population across multiple clinical settings is feasible. Systematic screening sheds light on the factors that make adherence difficult in JIA and identifies targets for future adherence interventions in clinical practice.

A166: Evaluation of Quality Indicators and Disease Damage in Childhood-Onset Systemic Lupus Erythematosus Patients

Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that can affect virtually every organ system and may lead to significant morbidities. A recent publication identified quality indicators specific to childhood‐onset SLE (cSLE) based on scientific evidence and expert opinion. Our study measured compliance with certain quality indicators and assessed organ‐specific dysfunction in our cSLE population using a validated damage index, which will help define a baseline for which to optimize management and focus treatment to control the underlying disease and prevent adverse effects of therapy.

Gaps in Mental Health Care for Youth with Rheumatologic Conditions: A Mixed Methods Study of Perspectives from Behavioral Health Providers

To identify behavioral health provider perspectives on gaps in mental health care for youth with rheumatologic conditions.

Evidence for Updating the Core Domain Set of Outcome Measures for Juvenile Idiopathic Arthritis: Report from a Special Interest Group at OMERACT 2016

Objective. The current Juvenile Idiopathic Arthritis (JIA) Core Set was developed in 1997 to identify the outcome measures to be used in JIA clinical trials using statistical and consensus-based techniques, but without patient involvement. The importance of patient/parent input into the research process has increasingly been recognized over the years. An Outcome Measures in Rheumatology (OMERACT) JIA Core Set Working Group was formed to determine whether the outcome domains of the current core set are relevant to those involved or whether the core set domains should be revised. Methods. Twenty-four people from the United States, Canada, Australia, and Europe, including patient partners, formed the working group. Guided by the OMERACT Filter 2.0 process, we performed (1) a systematic literature review of outcome domains, (2) a Web-based survey (142 patients, 343 parents), (3) an idea-generation study (120 parents), (4) 4 online discussion boards (24 patients, 20 parents), and (5) a Special Interest Group (SIG) activity at the OMERACT 13 (2016) meeting. Results. A MEDLINE search of outcome domains used in studies of JIA yielded 5956 citations, of which 729 citations underwent full-text review, and identified additional domains to those included in the current JIA Core Set. Qualitative studies on the effect of JIA identified multiple additional domains, including pain and participation. Twenty-one participants in the SIG achieved consensus on the need to revise the entire JIA Core Set. Conclusion. The results of qualitative studies and literature review support the need to expand the JIA Core Set, considering, among other things, additional patient/parent-centered outcomes, clinical data, and imaging data.

Asymptomatic intracardiac mass in a 14-year-old girl with granulomatosis with polyangiitis: Case report

Granulomatosis with polyangiitis (GPA; Wegener’s granulomatosis) is a systemic necrotizing vasculitis of unknown etiology that commonly involves the upper airways, lungs, and kidneys. Cardiac involvement with an intracardiac mass is an exceedingly rare manifestation of this disease, especially in the pediatric population where, to our knowledge, only one article exists to date that has described such a finding. In this report, we present the case of an adolescent female who initially presented with renal failure and an intracardiac mass. Subsequent work-up led to a diagnosis of granulomatosis with polyangiitis (GPA). Cardiac manifestations in pediatric GPA are not common; however, they may be more prevalent than reported given recent adult literature and concern for clinically silent abnormalities.