Consensus Approach to a Treat-to-target Strategy in Juvenile Idiopathic Arthritis Care: Report From the 2020 PR-COIN Consensus Conference.

OBJECTIVE: Treat to target (T2T) is a strategy of adjusting treatment until a target is reached. An international task force recommended T2T for juvenile idiopathic arthritis (JIA) treatment. Implementing T2T in a standard and reliable way in clinical practice requires agreement on critical elements of (1) target setting, (2) T2T strategy, (3) identifying barriers to implementation, and (4) patient eligibility. A consensus conference was held among Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) stakeholders to inform a statement of understanding regarding the PR-COIN approach to T2T. METHODS: PR-COIN stakeholders including 16 healthcare providers and 4 parents were invited to form a voting panel. Using the nominal group technique, 2 rounds of voting were held to address the above 4 areas to select the top 10 responses by rank order. RESULTS: Incorporation of patient goals ranked most important when setting a treatment target. Shared decision making (SDM), tracking measurable outcomes, and adjusting treatment to achieve goals were voted as the top elements of a T2T strategy. Workflow considerations, and provider buy-in were identified as key barriers to T2T implementation. Patients with JIA who had poor prognostic factors and were at risk for high disease burden were leading candidates for a T2T approach. CONCLUSION: This consensus conference identified the importance of incorporating patient goals as part of target setting and of the influence of patient stakeholder involvement in drafting treatment recommendations. The network approach to T2T will be modified to address the above findings, including solicitation of patient goals, optimizing SDM, and better workflow integration.

Lack of Concordance in Interrater Scoring of the Provider's Global Assessment of Children With Juvenile Idiopathic Arthritis With Low Disease Activity.

OBJECTIVE: 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. METHODS: Profiles of clinical and laboratory findings from 20 patients with JIA with no apparent disease activity were given to 51 providers, who were asked to score the PGA using a 21-circle visual analog scale (range 0-10). Following initial scoring, providers discussed each profile and reasons for assigning the score given, and then were asked to rescore each profile. Providers were asked to list variables that influenced their scoring most strongly. Using a mixed-model approach, the intraclass correlation coefficient (ICC) of the final scores served as the measure of concordance. RESULTS: A total of 504 PGA scores were obtained. The overall ICC of the initial scores was 0.18. Thus, 18% of nonconcordance of the scores was attributable to patient differences, while 82% was due to provider variation. Variables that influenced scoring most strongly were (in order of frequency) presence of pain, questionable temporomandibular joint involvement, loss of joint motion, presence of any morning stiffness, psoriasis, and past history of uveitis. CONCLUSION: The low ICC suggests poor agreement among providers scoring the PGA in JIA patients with low or no disease activity. Given the ubiquitous use of the PGA in classification and response criteria for JIA and other pediatric rheumatic diseases, substantive efforts are needed to bring about greater uniformity in scoring of global disease activity by providers.

Information technology in paediatric rheumatology.

Information technology in paediatric rheumatology has seen several exciting developments in recent years. The new multidimensional questionnaires for juvenile idiopathic arthritis, juvenile dermatomyositis, and juvenile autoinflammatory diseases integrate all major parent- and child-reported outcomes (PCROs) used in these diseases into a single tool, and provide an effective guide to manage, document change in health, assess effectiveness of therapeutic interventions, and verify the parent and child satisfaction with illness outcome. The Pharmachild registry is aimed to gain information concerning the long-term effectiveness and safety of the medications currently used in juvenile idiopathic arthritis, particularly biologic agents, through collection of prospective data in a large, multinational sample of patients. Children and their parents are directly involved in the data collection by means of the regular completion of a digital version of a multidimensional questionnaire. The Patient-Reported Outcomes Measurement Information System (PROMIS) employs modern measurement science to advance assessment of PCROs, particularly HRQL, and offers multidimensional profile measures. The conceptual link of paediatric PROMIS with adult instruments facilitates harmonisation of assessments made in children and adolescents with those carried out in young adults in the process of transition of medical care. Development of electronic versions of questionnaires that permit their completion through smartphones or touch-screen devices will revolutionise information collection from parents and children, foster the regular collection of PCROs in routine care, and ultimately improve the quality of self-reported health data, and patient outcomes.

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

OBJECTIVE: 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 registry's architecture and initial data, and we demonstrate how RISE is being used to improve the quality of care. METHODS: RISE is a certified Centers for Medicare and Medicaid Services Qualified Clinical Data Registry, allowing collection of data without individual patient informed consent. We analyzed data between October 1, 2014 and September 30, 2015 to characterize initial practices and patients captured in RISE. We also analyzed medication use among rheumatoid arthritis (RA) patients and performance on several quality measures. RESULTS: Across 55 sites, 312 clinicians contributed data to RISE; 72% were in group practice, 21% in solo practice, and 7% were part of a larger health system. Sites contributed data on 239,302 individuals. Among the subset with RA, 34.4% of patients were taking a biologic or targeted synthetic disease-modifying antirheumatic drug (DMARD) at their last encounter, and 66.7% were receiving a nonbiologic DMARD. Examples of quality measures include that 55.2% had a disease activity score recorded, 53.6% a functional status score, and 91.0% were taking a DMARD in the last year. CONCLUSION: RISE provides critical infrastructure for improving the quality of care in rheumatology and is a unique data source to generate new knowledge. Data validation and mapping are ongoing and RISE is available to the research and clinical communities to advance rheumatology.

Improving care delivery and outcomes in pediatric rheumatic diseases.

PURPOSE OF REVIEW: This 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 FINDINGS: Recent 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. SUMMARY: The 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 ABSTRACT: http://links.lww.com/COR/A28.