Esi M. Morgan

Rheumatology Informatics System for Effectiveness: A National Informatics-Enabled Registry for Quality Improvement

The Rheumatology Informatics System for Effectiveness (RISE) is a national electronic health record (EHR)–enabled registry. RISE passively collects data from EHRs of participating practices, provides advanced quality measurement and data analytic capacities, and fulfills national quality reporting requirements. Here we report the registrys architecture and initial data, and we demonstrate how RISE is being used to improve the quality of care.

Treating juvenile idiopathic arthritis to target: recommendations of an international task force

Recent therapeutic advances in juvenile idiopathic arthritis (JIA) have made remission an achievable goal for most patients. Reaching this target leads to improved outcomes. The objective was to develop recommendations for treating JIA to target. A Steering Committee formulated a set of recommendations based on evidence derived from a systematic literature review. These were subsequently discussed, amended and voted on by an international Task Force of 30 paediatric rheumatologists in a consensus-based, Delphi-like procedure. Although the literature review did not reveal trials that compared a treat-to-target approach with another or no strategy, it provided indirect evidence regarding an optimised approach to therapy that facilitated development of recommendations. The group agreed on six overarching principles and eight recommendations. The main treatment target, which should be based on a shared decision with parents/patients, was defined as remission, with the alternative target of low disease activity. The frequency and timeline of follow-up evaluations to ensure achievement and maintenance of the target depend on JIA category and level of disease activity. Additional recommendations emphasise the importance of ensuring adequate growth and development and avoiding long-term systemic glucocorticoid administration to maintain the target. All items were agreed on by more than 80% of the members of the Task Force. A research agenda was formulated. The Task Force developed recommendations for treating JIA to target, being aware that the evidence is not strong and needs to be expanded by future research. These recommendations can inform various stakeholders about strategies to reach optimal outcomes for JIA.

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.

Toward the development of a core set of outcome domains to assess shared decision-making interventions in rheumatology : results from an OMERACT Delphi survey and consensus meeting

Objective. The aim of this Outcome Measures in Rheumatology (OMERACT) Working Group was to determine the core set of outcome domains and subdomains for measuring the effectiveness of shared decision-making (SDM) interventions in rheumatology clinical trials. Methods. Following the OMERACT Filter 2.0, and based on a previous literature review of SDM outcome domains and a nominal group process at OMERACT 2014, (1) an online Delphi survey was conducted to gather feedback on the draft core set and refine its domains and subdomains, and (2) a workshop was held at the OMERACT 2016 meeting to gain consensus on the draft core set. Results. A total of 170 participants completed Round 1 of the Delphi survey, and 116 completed Round 2. Respondents came from 29 countries, with 49% being patients/caregivers. Results showed that 14 out of the 17 subdomains within the 7 domains exceeded the 70% criterion (endorsement ranged from 83% to 100% of respondents). At OMERACT 2016, only 8% of the 96 attendees were patients/caregivers. Despite initial votes of support in breakout groups, there was insufficient comfort about the conceptualization of these 7 domains and 17 subdomains for these to be endorsed at OMERACT 2016 (endorsement ranged from 17% to 68% of participants). Conclusion. Differences between the Delphi survey and consensus meeting may be explained by the manner in which the outcomes were presented, variations in participant characteristics, and the context of voting. Further efforts are needed to address the limited understanding of SDM and its outcomes among OMERACT participants.

Lack of Concordance in Inter‐Rater Scoring of the Provider's Global Assessment of Children with Juvenile Idiopathic Arthritis with Low Disease Activity

To measure agreement among raters when scoring the physician/provider global assessment (PGA) of disease activity in patients with juvenile idiopathic arthritis (JIA) with no apparent disease activity, and to identify clinical and laboratory parameters that most strongly influence provider scoring of the PGA.

Development and validation of the self-reported PROMIS pediatric pain behavior item bank and short form scale.

Abstract Pain behaviors are important indicators of functioning in chronic pain; however, no self-reported pain behavior instrument has been developed for pediatric populations. The purpose of this study was to create a brief pediatric measure of patient-reported pain behaviors as part of the Patient-Reported Outcome Measurement Information System (PROMIS). A pool of 47 candidate items for this measure had been previously developed through qualitative research. In this study, youth with chronic pain associated with juvenile fibromyalgia, juvenile idiopathic arthritis, or sickle cell disease (ages 8-18 years) from 3 pediatric centers completed all 47 candidate items for development of the pain behavior item bank along with established measures of pain interference, depressive symptoms, fatigue, average pain intensity, and pain catastrophizing. Caregivers reported on sociodemographic information and health history. Psychometric properties of the pain behavior items were examined using an item response theory framework with confirmatory factor analysis and examination of differential item functioning, internal consistency, and test information curves. Results were used along with expert consensus and alignment with the adult PROMIS pain behavior items to arrive at an 8-item pediatric pain behavior short form, and all 47 items were retained in a calibrated item bank. Confirmatory factor analysis and correlations with validated measures of pain, pain interference, and psychosocial functioning provided support for the short forms reliability and validity. The new PROMIS pediatric pain behavior scale provides a reliable, precise, and valid measure for future research on pain behavior in school-aged children with chronic pain.

Establishing clinical meaning and defining important differences for Patient-Reported Outcomes Measurement Information System (PROMIS®) measures in juvenile idiopathic arthritis using standard setting with patients, parents, and providers

BackgroundPatient-Reported Outcomes Measurement Information System (PROMIS) measures are used increasingly in clinical care. However, for juvenile idiopathic arthritis (JIA), scores lack a framework for interpretation of clinical severity, and minimally important differences (MID) have not been established, which are necessary to evaluate the importance of change.MethodsWe identified clinical severity thresholds for pediatric PROMIS measures of mobility, upper extremity function (UE), fatigue, and pain interference working with adolescents with JIA, parents of JIA patients, and clinicians, using a standard setting methodology modified from educational testing. Item parameters were used to develop clinical vignettes across a range of symptom severity. Vignettes were ordered by severity, and panelists identified adjacent vignettes considered to represent upper and lower boundaries separating category cut-points (i.e., from none/mild problems to moderate/severe). To define MIDs, panelists reviewed a full score report for the vignettes and indicated which items would need to change and by how much to represent “just enough improvement to make a difference.”ResultsFor fatigue and UE, cut-points among panels were within 0.5 SD of each other. For mobility and pain interference, cut-scores among panels were more divergent, with parents setting the lowest cut-scores for increasing severity. The size of MIDs varied by stakeholders (parents estimated largest, followed by patients, then clinicians). MIDs also varied by severity classification of the symptom.ConclusionsWe estimated clinically relevant severity cut-points and MIDs for PROMIS measures for JIA from the perspectives of multiple stakeholders and found notable differences in perspectives.

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.

Systemwide Implementation of Patient-Reported Outcomes in Routine Clinical Care at a Children's Hospital

BACKGROUND Despite a growing literature on patient-reported outcomes (PROs), little has been written to guide development of a standardized, systemwide PRO program across multiple clinics and conditions. A PRO implementation program, which was created at Cincinnati Childrens Hospital Medical Center, a large childrens hospital, can serve as a standardized approach for the use of PROs in a clinical setting. METHODS Recommended standardized PRO implementation components include identification of a committed clinical leader and team, selection of an instrument that addresses the identified outcome of interest, specifying threshold scores that indicate when an intervention is needed, identification of clinical interventions to be triggered by threshold scores, provision of training for providers and staff involved in the PRO implementation process, and the measurement and monitoring of PRO use. RESULTS For each instrument, the completion goal is 80%, defined as the number of PRO measures that were actually completed divided by the number that should have been completed. The overall combined completion rate is 75% for the 68 unique instruments currently in use. Case studies of specific clinical team experiences demonstrate the value of using PROs and the implementation components and shows how PROs are used to promote patient-centered care. CONCLUSION Data on PRO implementation are collected on an ongoing basis to confirm the value of the program, define ongoing improvement, and fuel collaborative research to further refine essential implementation components and successful spread. Next steps include measuring the influence of PRO use on coproduction of patient-centered clinical care and the impact PRO measurement has on patient outcomes.

Treat to Target in Juvenile Idiopathic Arthritis: Challenges and Opportunities

AbsractPurpose of reviewThis article reviews current knowledge around the paradigm “treat to target” (T2T) that has emerged as a successful treatment strategy for chronic diseases. While the majority of the current literature in rheumatic diseases has focused on formally designing and implementing interventions in rheumatoid arthritis (RA), we provide evidence that supports the application of a T2T strategy in the treatment of juvenile idiopathic arthritis (JIA).Recent findingsThere is strong evidence for use of T2T in RA, and a recent trial demonstrated success of a Learning Collaborative intervention to implement T2T in clinical practice. While there are no existing clinical trials directly comparing T2T to other treatment strategies for JIA, there is indirect evidence that T2T is not inferior to other treatment strategies. Potential challenges in applying T2T to JIA include the heterogeneity between JIA subtypes, the heterogeneity in outcome measures, and the complexity of successfully incorporating shared decision making in clinical practice. However, there are also several potential benefits of implementingT2T in JIA, and a single-center pilot study has shown initial significant improvement in clinical outcomes.SummaryA movement towards adoption of a T2T strategy for JIA has commenced. Further study will be needed to determine best practices for implementation, there is indication that the framework of a Learning Health System may facilitate successful adoption.