PR-COIN is transforming care, health and costs for all children and youth with pediatric rheumatological conditions through continuous improvement, innovation and discovery. Below is a listing of our active research projects.
Arthritis outcomes for those with Down syndrome in the PR-COIN registry
Purpose: We would like to determine if there is any difference in arthritis-related outcomes between those with Down Syndrome and those without. We believe those with Down syndrome will have worse outcomes.
PI: Jordan Jones, DO, MS - Children's Mercy Kansas City
Pain and function in those with juvenile arthritis and joint hypermobility in the PR-COIN registry
Purpose: We would like to determine if there is any difference in patient and provider reported outcomes between those with juvenile arthritis (JIA) and joint hypermobility (JH) and those with JIA and without JH. We believe those with JH will have worse outcomes independent of JIA disease activity.
PI: Jordan Jones, DO, MS - Children's Mercy Kansas City
Survey on the patient perception of disease (overall well-being) domain of the OMERACT core set for studies in JIA
Purpose: The purpose of this study is to seek consensus for a working definition of the “Patient perception of disease (overall well-being)” within the OMERACT (Outcomes Measures in Rheumatology Clinical Trials) core measurement set for studies in juvenile idiopathic arthritis (JIA). Through this survey we seek to confirm the proposed detailed description of what the domain includes, how it is organized and proposal of a new title for the domain. This work will be completed through electronic survey.
We are hoping to obtain input from adult patients with JIA and caregiver/parents of children with JIA.
PI: Esi Morgan, MD, MSCE - Seattle Children's Hospital
Effect of improved race and ethnicity data quality on assessment of research outcomes, an analysis of the PR-COIN
Purpose: Improved race and ethnicity data quality in registries can prevent the exclusion of minority patients from research.
PI: Katelyn Banschbach, MD - Seattle Children's Hospital
Measuring key performance indicators for the management of children with juvenile idiopathic arthritis in an Advanced Physiotherapist Practitioner (APP) model of care in pediatric rheumatology
Purpose: There is currently no established framework for evaluating quality of care in JIA management. Although there are recommendations for performance measures and assessments, there are no targets or goals for what values these measures, and scores should be. Our study will therefore focus on evaluating the completion of assessments and measures as indicators of quality of care process measures.
PI: Michelle Batthish, MD, MS - McMaster
Evaluation of Health Disparaties in Outcomes of Patients w JIA
Purpose: Are there disparities in JIA outcomes based on patient’s race, ethnicity, primary language, age, sex assigned at birth, insurance status, and parental education level? Our hypothesis is that benchmarking our performance will identify gaps in care for patients with JIA that will lead to further improvement efforts.
PI: Julia Harris, MD - Children's Mercy Kansas City
Develop and Pilot an Online Digital Health Application Informing Patient Centered Decision-Making
Purpose: JIA affects 80,000 children in US, a major cause for childhood disability. Yet the delivery of patient-centered care remains a critical challenge. The proposed research could significantly improve the personalization of the clinical care experiences and the outcomes. There is an urgent need to understand how to integrate technologies as we are moving towards the new co-producing health era. This research represents an important first step in understanding the design requirements for a technology to support diverse teams and how to fit these technologies into the work and workflow of patients and clinicians. If successful, this work can provide important information to researchers, designers, and health care organizations on improving shared decision making and patient-clinician collaboration.
PI: Esi Morgan, MD, MSCE - Seattle Children's Hospital
Improving Juvenile Idiopathic Arthritis Outcomes through Accessible Patient Education Materials
Purpose: JIA is a chronic disease with childhood onset that without timely and effective treatment can result in disability and chronic pain. It is thus very important that at the time of diagnosis patients with JIA and their families are empowered with knowledge to participate with their rheumatologist in shared decision making (SDM) about treatment. A needs assessment reveals there is a critical gap in information provided at this important time that this proposal will address. The objectives of the study are therefore: To develop educational resources in mixed media targeting JIA families. These materials will then be digitized to an online platform for accessibility. The literacy level and comprehension level will be accessible. Materials will be suitable for cross-cultural translation. The knowledge gained will support families in discussing treatment options with their rheumatologist.
We hypothesize, that providing these materials will help improve the quality of SDM and result in more optimal treatment outcomes.
PI: Esi Morgan, MD, MSCE - Seattle Children's Hospital