A5062989028- Autoimmune and Inflammatory Disorders Research
- Adolescent and Pediatric Healthcare
- Systemic Lupus Erythematosus Research
- Childhood Cancer Survivors' Quality of Life
- Immunodeficiency and Autoimmune Disorders
- Acute Lymphoblastic Leukemia research
- Rheumatoid Arthritis Research and Therapies
- Kawasaki Disease and Coronary Complications
- Pneumonia and Respiratory Infections
- Pharmaceutical studies and practices
- Family and Disability Support Research
- Respiratory viral infections research
- Neurogenetic and Muscular Disorders Research
- Inflammatory Bowel Disease
- Connective tissue disorders research
- Tuberculosis Research and Epidemiology
- Innovations in Medical Education
- Intergenerational Family Dynamics and Caregiving
- COVID-19 and healthcare impacts
- Liver Diseases and Immunity
- Hip disorders and treatments
- Geriatric Care and Nursing Homes
- Vitamin K Research Studies
- Alcoholism and Thiamine Deficiency
- Pharmacy and Medical Practices
Children's Mercy Hospital
2015-2025
University of Missouri–Kansas City
2018-2025
Mercy Hospital
2019-2024
Connecticut Children's Medical Center
2024
University of North Carolina at Chapel Hill
2023
Durham VA Medical Center
2023
Emory University
2023
American College of Rheumatology
2023
eLearning Studios (United Kingdom)
2023
Rheumatology Consultants
2023
Objective. The current Juvenile Idiopathic Arthritis (JIA) Core Set used in randomized controlled trials (RCT) and longitudinal observational studies (LOS) was developed without the input of patients/parents. At Outcome Measures Rheumatology (OMERACT) 2016, a special interest group voted to reconsider core set, incorporating broader input. We describe subsequent work culminating an OMERACT 2018 plenary consensus voting. Methods. Candidate domains were identified through literature review,...
Objective. Nonadherence is currently an underrecognized and potentially modifiable obstacle to care in juvenile idiopathic arthritis (JIA). The purpose of our study was design implement a standardized approach identifying adherence barriers for youth with JIA across 7 pediatric rheumatology clinics through the Pediatric Rheumatology Care Outcomes Improvement Network (PR-COIN) assess frequency patients their caregivers treatment modalities. Methods. An iterative process using coproduction...
To describe the selection, development, and implementation of quality measures (QMs) for juvenile idiopathic arthritis (JIA) by Pediatric Rheumatology Care Outcomes Improvement Network (PR-COIN), a multihospital learning health network using improvement methods leveraging QMs to drive improved outcomes across JIA population since 2011.An American College Rheumatology-endorsed multistakeholder process previously selected initial QMs. Clinicians in PR-COIN parents children with collaboratively...
Data from the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) registry suggests that reliable collection of patient-reported outcomes (PROs) varies across sites. The objective this study was to better understand practices collecting PROs at PR-COIN A REDCap survey sent lead representative for each site. Registry data were analyzed completion rates PROs. Interviews physician leaders high performing sites conducted by videoconference, audiotranscribed themes summarized....
Pediatric rheumatologic diseases (PRDs) are characterized by high rates of anxiety and depression known to impact health-related outcomes. We present guidance statements assess manage mental health concerns for youth with PRDs in pediatric rheumatology practice. Development the was initiated 2019 concluded November 2023. It included: 1) Formation a taskforce (including rheumatologists, behavioral providers, patients, parents), led two licensed psychologists board-certified 2) Iterative...
Objective. To identify targets for improving mental healthcare of adolescents with systemic lupus erythematosus (SLE) by assessing current practices and perceived barriers health intervention pediatric rheumatology clinicians. Methods. Members the Childhood Arthritis Rheumatology Research Alliance (CARRA) completed a Web-based survey practices, beliefs, barriers. We examined associations between provider characteristics frequency to screening treatment using multivariable linear regression....
Scurvy is one of the oldest diseases known to mankind. Although presently rare in developed world, scurvy was a common potentially fatal disease. In recent times, most risk factors for include alcoholism, low socioeconomic status, and severely poor nutrition or dietary restriction secondary psychiatric illness developmental disorders. Our case demonstrates importance having high index clinical suspicion an uncommon disease countries emphasizes necessity screening that could reduce extensive...
Many pediatric rheumatology patients are at increased risk of pneumococcal disease secondary to a deficient immune system and/or immunosuppressive medications. The goal this study was improve vaccination rates in high-risk population.Eligible included children least 2 years old and adults with systemic lupus erythematosus currently on medication. Interventions presentation providers,creation immunization algorithm, previsit planning, placing reminders clinic forms, sending reminder e-mails...
To identify behavioral health provider perspectives on gaps in mental care for youth with rheumatologic conditions.Social workers (n = 34) and psychologists 8) at pediatric rheumatology centers the Childhood Arthritis Rheumatology Research Alliance (CARRA) completed an online survey assessing current practices needs of conditions. Responses were compared to a published CARRA rheumatologists 119). Thematic analysis 20 semi-structured interviews providers was performed.One-third 100) had no...
Mental health disorders are common in youth with rheumatological disease yet optimal intervention strategies understudied this population. We examined patient and parent perspectives on mental for disease.
Objective Treat to target (T2T) is a strategy of adjusting treatment until reached. An international task force recommended T2T for juvenile idiopathic arthritis (JIA) treatment. Implementing in standard and reliable way clinical practice requires agreement on critical elements (1) setting, (2) strategy, (3) identifying barriers implementation, (4) patient eligibility. A consensus conference was held among Pediatric Rheumatology Care Outcomes Improvement Network (PR-COIN) stakeholders inform...
To assess the quality of medical care in childhood-onset systemic lupus erythematosus (SLE) at tertiary pediatric rheumatology centers as measured by observance SLE indicators (SLE-QIs).International consensus has been achieved for SLE-QIs capturing provision 9 domains: diagnostic testing, education cardiovascular (CV) risk and lifestyles, nephritis (LN), medication management, bone health, ophthalmologic surveillance, transition, pregnancy, vaccination. Using record information, level...
Healthcare providers were rapidly forced to modify the way they practiced medicine during coronavirus disease 2019 (COVID-19) pandemic. Many transitioned from seeing their patients in person virtually using telemedicine platforms with limited training and experience this medium. In pediatric rheumatology, was further complicated as musculoskeletal exams typically require hands-on assessment of patients. The objective study examine adoption into rheumatology practices, assess its benefits...
We evaluated a care-coordination project assisted by screen-phone to support and educate caregivers. A total of 113 caregivers home-dwelling veterans with dementia were recruited the study: 72 white, 32 African American nine Hispanic. Caregivers assessed for burden, depression, coping, quality life, knowledge satisfaction. None outcome measures changed significantly after 12 months. Forty care-recipient caregiver dyads responded 12-month telephone satisfaction survey. The respondents more...
Abstract Background The Childhood Arthritis and Rheumatology Research Alliance (CARRA) developed consensus treatment plans (CTPs) to compare initiation strategies for systemic juvenile idiopathic arthritis (sJIA). First-line options sJIA (FROST) was a prospective observational study assess CTP outcomes using the CARRA Registry. Methods Patients with new-onset were enrolled if they received initial according biologic CTPs (IL-1 or IL-6 inhibitor) non-biologic (glucocorticoid (GC) monotherapy...
Objective. The current Juvenile Idiopathic Arthritis (JIA) Core Set was developed in 1997 to identify the outcome measures be used JIA clinical trials using statistical and consensus-based techniques, but without patient involvement. importance of patient/parent input into research process has increasingly been recognized over years. An Outcome Measures Rheumatology (OMERACT) Working Group formed determine whether domains core set are relevant those involved or should revised. Methods....
The Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) is a North American learning health network focused on improving outcomes of children with juvenile idiopathic arthritis (JIA). JIA chronic autoimmune disease that can lead to morbidity related persistent joint ocular inflammation. PR-COIN has shared patient registry tracks twenty quality measures including ten outcome which six are activity. network's global aim, set in 2021, was increase the percent patients...
To determine the utility and acceptability for depression anxiety screening of adolescents young adults (AYA) with childhood-onset systemic lupus erythematosus (cSLE) in pediatric rheumatology setting.
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 an intracardiac mass exceedingly rare manifestation this disease, especially in pediatric population where, to our knowledge, only one article exists date has described such finding. In report, we present case adolescent female who initially presented renal failure mass. Subsequent work-up...