scholarly journals Delays to Care in Pediatric Lupus Patients: Data From the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry

2018 ◽  
Vol 70 (3) ◽  
pp. 420-427 ◽  
Author(s):  
Tamar B. Rubinstein ◽  
Wenzhu B. Mowrey ◽  
Norman T. Ilowite ◽  
Dawn M. Wahezi ◽  
Keyword(s):  
Rheumatology Research ◽  
Childhood Arthritis ◽  
Pediatric Lupus ◽  
Research Alliance

scholarly journals Understanding patient-provider discordance in adolescents with lupus: The role of pain and antidepressant medication use

2020 ◽  
Vol 7 (2) ◽  
pp. 205510292097771
Author(s):  
Kathleen Kenney-Riley ◽  
Shari Salzhauer Berkowitz ◽  
Kimberly Rapoza
Keyword(s):  
Disease Activity ◽  
Secondary Analysis ◽  
Medication Use ◽  
Antidepressant Medication ◽  
Childhood Arthritis ◽  
Pain Scores ◽  
Pediatric Lupus ◽  
Research Alliance ◽  
Lupus Disease Activity

The current study examines depression and pain as potential contributors to patient-provider discordance in the assessment of lupus disease activity. The study conducted a secondary analysis of data obtained from the Childhood Arthritis and Rheumatology Research Alliance registry, with N = 859 adolescent participants. Assessments of pain, disease activity, and antidepressant medication use were collected from the patient and provider. Results indicated that depression might be underdiagnosed in pediatric lupus patients. While psychotropic medication and pain scores were independently related to greater patient-provider discordance regarding health status, pain mediated this relationship. Implications for treatment outcomes are discussed.

scholarly journals Enthesitis-related Arthritis Is Associated with Higher Pain Intensity and Poorer Health Status in Comparison with Other Categories of Juvenile Idiopathic Arthritis: The Childhood Arthritis and Rheumatology Research Alliance Registry

2012 ◽  
Vol 39 (12) ◽  
pp. 2341-2351 ◽  
Author(s):  
PAMELA F. WEISS ◽  
TIMOTHY BEUKELMAN ◽  
LAURA E. SCHANBERG ◽  
YUKIKO KIMURA ◽  
ROBERT A. COLBERT
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Health Status ◽  
Pain Intensity ◽  
Physical Function ◽  
Physician Global Assessment ◽  
Enthesitis Related Arthritis ◽  
Rheumatology Research ◽  
Childhood Arthritis ◽  
Patient Reported ◽  
Research Alliance

Objective.To assess the relative effect of clinical factors and medications on pain intensity, physical function, and health status in juvenile idiopathic arthritis (JIA).Methods.We conducted a retrospective cross-sectional study of data from children with JIA enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry. We tested whether clinical characteristics of JIA were associated with pain intensity, physical function, and health status using multivariable linear and ordinal logistic regression.Results.During the study period, 2571 subjects with JIA enrolled in the CARRA Registry. Ratings of pain intensity, physical function, and health status differed significantly between JIA categories. In comparison to other categories of JIA, subjects with enthesitis-related arthritis (ERA) reported worse pain and function. In multivariable analyses, higher active joint count and current use of nonsteroidal antiinflammatory drugs (NSAID), biologics, or corticosteroids were associated with worse scores on all patient-reported measures. ERA and older age were significantly associated with higher pain intensity and poorer health status. Systemic JIA and uveitis were significantly associated with worse health status. Enthesitis, sacroiliac tenderness, and NSAID use were independently associated with increased pain intensity in ERA. The correlation was low between physician global assessment of disease activity and patient-reported pain intensity, physical function, and health status.Conclusion.Significant differences in pain intensity, physical function, and health status exist among JIA categories. These results suggest that current treatments may not be equally effective for particular disease characteristics more common in specific JIA categories, such as enthesitis or sacroiliac tenderness in ERA.

Childhood Arthritis and Rheumatology Research Alliance Consensus Clinical Treatment Plans for Juvenile Dermatomyositis with Persistent Skin Rash

2016 ◽  
Vol 44 (1) ◽  
pp. 110-116 ◽  
Author(s):  
Adam M. Huber ◽  
Susan Kim ◽  
Ann M. Reed ◽  
Ruy Carrasco ◽  
Brian M. Feldman ◽  
...  
Keyword(s):  
Skin Rash ◽  
Complete Resolution ◽  
Juvenile Dermatomyositis ◽  
Clinical Treatment ◽  
Muscle Disease ◽  
Nominal Group ◽  
Rheumatology Research ◽  
Childhood Arthritis ◽  
Treatment Plans ◽  
Research Alliance

Objective.Juvenile dermatomyositis (JDM) is the most common form of idiopathic inflammatory myopathy in children. While outcomes are generally thought to be good, persistence of skin rash is a common problem. The goal of this study was to describe the development of clinical treatment plans (CTP) for children with JDM characterized by persistent skin rash despite complete resolution of muscle involvement.Methods.The Childhood Arthritis and Rheumatology Research Alliance, a North American consortium of pediatric rheumatologists and other healthcare providers, used a combination of Delphi surveys and nominal group consensus meetings to develop CTP that reflected consensus on typical treatments for patients with JDM with persistent skin rash.Results.Consensus was reached on patient characteristics and outcome assessment. Patients should have previously received corticosteroids and methotrexate (MTX). Three consensus treatment plans were developed. Plan A added intravenous immunoglobulin (IVIG) if it was not already being used. Plan B added mycophenolate mofetil, while Plan C added cyclosporine. Continuation of previous treatments, including corticosteroids, MTX, and IVIG, was permitted in plans B and C.Conclusion.Three consensus CTP were developed for use in children with JDM and persistent skin rash despite complete resolution of muscle disease. These CTP reflect typical treatment approaches and are not to be considered treatment recommendations or standard of care. Using prospective data collection and statistical methods to account for nonrandom treatment assignment, it is expected that these CTP will be used to allow treatment comparisons, and ultimately determine the best treatment for these patients.

scholarly journals Research priorities in pediatric rheumatology: The Childhood Arthritis and Rheumatology Research Alliance (CARRA) consensus

2008 ◽  
Vol 6 (1) ◽  
pp. 5 ◽  
Author(s):  
Sylvia Ota ◽  
Randy Q Cron ◽  
Laura E Schanberg ◽  
Kathleen O'Neil ◽  
Elizabeth D Mellins ◽  
...  
Keyword(s):  
Pediatric Rheumatology ◽  
Research Priorities ◽  
Rheumatology Research ◽  
Childhood Arthritis ◽  
Research Alliance
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