Journal ArticlePediatr Rheumatol Online J · July 10, 2024
BACKGROUND: The American College of Rheumatology (ACR)/Childhood Arthritis and Rheumatology Research Alliance (CARRA) Mentoring Interest Group (AMIGO) is an inter-institutional mentorship program launched to target mentorship gaps within pediatric rheumato ...
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Journal ArticlePsychiatry Res · March 2024
The Patient Health Questionnaire 9 (PHQ-9) is the current standard outpatient screening tool for measuring and tracking the nine symptoms of major depressive disorder (MDD). While the PHQ-9 was originally conceptualized as a unidimensional measure, it has ...
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Journal ArticleClin Exp Rheumatol · February 2024
Psychological and emotional well-being are critical aspects of overall health for individuals with chronic rheumatologic conditions. Mental health-related literature, however, predominantly focuses on systemic lupus erythematosus or rheumatoid arthritis, w ...
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Journal ArticleSemin Arthritis Rheum · December 2023
OBJECTIVE: The COVID-19 pandemic has affected patient care in general. We aimed to analyze the impact of the pandemic on pediatric rheumatology practice. METHODS: An online survey including 22 questions was created by the representatives of the Emerging Rh ...
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ConferenceJ Eur Acad Dermatol Venereol · July 2023
BACKGROUND: The Localized Scleroderma Quality of Life Instrument (LoSQI) is a disease-specific patient-reported outcome (PRO) measure designed for children and adolescents with localized scleroderma (LS; morphea). This tool was developed using rigorous PRO ...
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Journal ArticlePediatr Rheumatol Online J · April 25, 2023
BACKGROUND: Juvenile localized scleroderma (LS) and systemic sclerosis (SSc) are rare pediatric conditions often associated with severe morbidities. Delays in diagnosis are common, increasing the risk for permanent damage and worse outcomes. This study exp ...
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Journal ArticleArthritis Care Res (Hoboken) · February 2023
OBJECTIVE: Patient-Reported Outcomes Measurement Information System (PROMIS) measures can be administered via computerized adaptive testing (CAT) or fixed short forms (FSFs), but the empirical benefits of CAT versus FSFs are unknown in juvenile myositis (J ...
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Journal ArticleJ Rheumatol · February 2023
OBJECTIVE: To examine the effect of psychiatric diagnoses on healthcare use in youth with systemic lupus erythematosus (SLE) during their first year of SLE care. METHODS: We conducted a retrospective cohort study using claims from 2000 to 2013 from Clinfor ...
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Journal ArticleJ Am Acad Dermatol · September 2022
BACKGROUND: The incidence of systemic lupus in children with discoid lupus is unknown. OBJECTIVE: This study assessed the baseline characteristics of patients with pediatric discoid lupus erythematosus (pDLE). METHODS: Medical records at 17 sites were revi ...
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Journal ArticlePediatr Rheumatol Online J · July 19, 2022
BACKGROUND: To report baseline characteristics, patient reported outcomes and treatment of children with Juvenile Dermatomyositis (JDM) in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry. METHODS: Children newly diagnosed with J ...
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Journal ArticleArthritis Care Res (Hoboken) · April 2022
OBJECTIVE: To provide evidence-based recommendations and expert guidance for the management of Kawasaki disease (KD), focusing on clinical scenarios more commonly addressed by rheumatologists. METHODS: Sixteen clinical questions regarding diagnostic testin ...
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Journal ArticleArthritis Rheumatol · April 2022
OBJECTIVE: To provide evidence-based recommendations and expert guidance for the management of Kawasaki disease (KD), focusing on clinical scenarios more commonly addressed by rheumatologists. METHODS: Sixteen clinical questions regarding diagnostic testin ...
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Journal ArticleRheum Dis Clin North Am · February 2022
Cardiovascular disease risk is evident during childhood for patients with juvenile systemic lupus erythematosus, juvenile dermatomyositis, and juvenile idiopathic arthritis. The American Heart Association defines cardiovascular health as a positive health ...
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ConferenceArthritis Care Res (Hoboken) · December 2021
OBJECTIVE: Down syndrome-associated arthritis (DA) is underrecognized, and current therapies used for juvenile idiopathic arthritis (JIA) appear to be poorly tolerated and less effective in patients with DA. The objective of this study was to characterize ...
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Journal ArticleIndian Journal of Rheumatology · September 1, 2021
This topical review summarizes recent literature on mental health symptoms experienced by children diagnosed with rheumatologic conditions including childhood-onset systemic lupus erythematosus (cSLE), juvenile idiopathic arthritis (JIA), and juvenile derm ...
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Journal ArticleSemin Arthritis Rheum · June 2021
OBJECTIVE: Idiopathic inflammatory myopathies (IIM) are a group of diseases characterized by muscle weakness, which limit activities of daily living. Patient Reported Outcomes Measurement Information System (PROMIS) is a set of outcome measures developed u ...
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Journal ArticlePediatr Rheumatol Online J · July 10, 2024
BACKGROUND: The American College of Rheumatology (ACR)/Childhood Arthritis and Rheumatology Research Alliance (CARRA) Mentoring Interest Group (AMIGO) is an inter-institutional mentorship program launched to target mentorship gaps within pediatric rheumato ...
Full textLink to itemCite
Journal ArticlePsychiatry Res · March 2024
The Patient Health Questionnaire 9 (PHQ-9) is the current standard outpatient screening tool for measuring and tracking the nine symptoms of major depressive disorder (MDD). While the PHQ-9 was originally conceptualized as a unidimensional measure, it has ...
Full textLink to itemCite
Journal ArticleClin Exp Rheumatol · February 2024
Psychological and emotional well-being are critical aspects of overall health for individuals with chronic rheumatologic conditions. Mental health-related literature, however, predominantly focuses on systemic lupus erythematosus or rheumatoid arthritis, w ...
Full textLink to itemCite
Journal ArticleSemin Arthritis Rheum · December 2023
OBJECTIVE: The COVID-19 pandemic has affected patient care in general. We aimed to analyze the impact of the pandemic on pediatric rheumatology practice. METHODS: An online survey including 22 questions was created by the representatives of the Emerging Rh ...
Full textLink to itemCite
ConferenceJ Eur Acad Dermatol Venereol · July 2023
BACKGROUND: The Localized Scleroderma Quality of Life Instrument (LoSQI) is a disease-specific patient-reported outcome (PRO) measure designed for children and adolescents with localized scleroderma (LS; morphea). This tool was developed using rigorous PRO ...
Full textLink to itemCite
Journal ArticlePediatr Rheumatol Online J · April 25, 2023
BACKGROUND: Juvenile localized scleroderma (LS) and systemic sclerosis (SSc) are rare pediatric conditions often associated with severe morbidities. Delays in diagnosis are common, increasing the risk for permanent damage and worse outcomes. This study exp ...
Full textLink to itemCite
Journal ArticleArthritis Care Res (Hoboken) · February 2023
OBJECTIVE: Patient-Reported Outcomes Measurement Information System (PROMIS) measures can be administered via computerized adaptive testing (CAT) or fixed short forms (FSFs), but the empirical benefits of CAT versus FSFs are unknown in juvenile myositis (J ...
Full textLink to itemCite
Journal ArticleJ Rheumatol · February 2023
OBJECTIVE: To examine the effect of psychiatric diagnoses on healthcare use in youth with systemic lupus erythematosus (SLE) during their first year of SLE care. METHODS: We conducted a retrospective cohort study using claims from 2000 to 2013 from Clinfor ...
Full textLink to itemCite
Journal ArticleJ Am Acad Dermatol · September 2022
BACKGROUND: The incidence of systemic lupus in children with discoid lupus is unknown. OBJECTIVE: This study assessed the baseline characteristics of patients with pediatric discoid lupus erythematosus (pDLE). METHODS: Medical records at 17 sites were revi ...
Full textLink to itemCite
Journal ArticlePediatr Rheumatol Online J · July 19, 2022
BACKGROUND: To report baseline characteristics, patient reported outcomes and treatment of children with Juvenile Dermatomyositis (JDM) in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry. METHODS: Children newly diagnosed with J ...
Full textLink to itemCite
Journal ArticleArthritis Care Res (Hoboken) · April 2022
OBJECTIVE: To provide evidence-based recommendations and expert guidance for the management of Kawasaki disease (KD), focusing on clinical scenarios more commonly addressed by rheumatologists. METHODS: Sixteen clinical questions regarding diagnostic testin ...
Full textLink to itemCite
Journal ArticleArthritis Rheumatol · April 2022
OBJECTIVE: To provide evidence-based recommendations and expert guidance for the management of Kawasaki disease (KD), focusing on clinical scenarios more commonly addressed by rheumatologists. METHODS: Sixteen clinical questions regarding diagnostic testin ...
Full textLink to itemCite
Journal ArticleRheum Dis Clin North Am · February 2022
Cardiovascular disease risk is evident during childhood for patients with juvenile systemic lupus erythematosus, juvenile dermatomyositis, and juvenile idiopathic arthritis. The American Heart Association defines cardiovascular health as a positive health ...
Full textLink to itemCite
ConferenceArthritis Care Res (Hoboken) · December 2021
OBJECTIVE: Down syndrome-associated arthritis (DA) is underrecognized, and current therapies used for juvenile idiopathic arthritis (JIA) appear to be poorly tolerated and less effective in patients with DA. The objective of this study was to characterize ...
Full textLink to itemCite
Journal ArticleIndian Journal of Rheumatology · September 1, 2021
This topical review summarizes recent literature on mental health symptoms experienced by children diagnosed with rheumatologic conditions including childhood-onset systemic lupus erythematosus (cSLE), juvenile idiopathic arthritis (JIA), and juvenile derm ...
Full textCite
Journal ArticleSemin Arthritis Rheum · June 2021
OBJECTIVE: Idiopathic inflammatory myopathies (IIM) are a group of diseases characterized by muscle weakness, which limit activities of daily living. Patient Reported Outcomes Measurement Information System (PROMIS) is a set of outcome measures developed u ...
Full textLink to itemCite
ConferencePediatr Rheumatol Online J · February 23, 2021
BACKGROUND: Mental health disorders are common in youth with rheumatological disease yet optimal intervention strategies are understudied in this population. We examined patient and parent perspectives on mental health intervention for youth with rheumatol ...
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Journal ArticleArthritis Care Res (Hoboken) · January 2021
OBJECTIVE: To assess parent perspectives regarding the emotional health impact of juvenile myositis (JM) on patients and families, and to assess preferences for emotional health screening and interventions. METHODS: Parents of children and young adults wit ...
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Journal ArticleQual Life Res · December 2020
PURPOSE: Anchoring vignettes (AVs) are a promising measurement technique to reduce bias in patient-reported outcome (PRO) measures by helping researchers understand differences in how individuals and groups interpret response options. However, little atten ...
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Journal ArticleJ Pediatr · November 2020
OBJECTIVES: To determine whether there is an association between adverse childhood experiences (ACEs) and childhood-onset arthritis, comparing youth with arthritis to both healthy youth and youth with other acquired chronic physical diseases (OCPD); and to ...
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Journal ArticleBr J Dermatol · October 2020
BACKGROUND: Paediatric localized scleroderma (LS) can negatively impact health-related quality of life (HRQoL) by causing skin fibrosis, abnormal limb development, disfigurement, and side-effects from immunosuppressive treatment. Studies to date have rarel ...
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Journal ArticleBr J Dermatol · March 2020
BACKGROUND: According to current standards, no existing patient-reported outcome (PRO) measures have high-quality validity evidence for use with individuals diagnosed with paediatric localized scleroderma (LS). This severely hinders patient-centred LS-focu ...
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Journal ArticleBr J Dermatol · October 2019
BACKGROUND: Children with discoid lupus erythematosus (DLE) are at risk for disfigurement and progression to systemic lupus erythematosus (SLE). Consensus is lacking regarding optimal care for children with DLE. OBJECTIVES: The aim of this study was to com ...
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Journal ArticlePediatr Rheumatol Online J · July 1, 2019
BACKGROUND: Childhood-onset systemic erythematosus lupus (cSLE) is characterized by more severe disease, widespread organ involvement and higher mortality compared to adult-onset SLE. However, cSLE is largely underfunded to carry out necessary research to ...
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Journal ArticleBr J Dermatol · January 2019
BACKGROUND: The Cutaneous Lupus Erythematosus Disease Area and Severity Index (CLASI) is a reliable outcome measure for cutaneous lupus erythematosus (CLE) in adults used in clinical trials. However, it has not been validated in children, limiting clinical ...
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Journal ArticlePediatr Rheumatol Online J · November 13, 2018
BACKGROUND: Juvenile dermatomyositis (JDM) is a rare autoimmune disease that causes significant morbidity and quality of life impairment. Little is known about the inpatient burden of JDM in the US. Our goal was to determine the prevalence and risk factors ...
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Journal ArticleJ Scleroderma Relat Disord · June 2018
INTRODUCTION: The Children's Dermatology Life Quality Index has been used to measure quality of life in studies of pediatric localized scleroderma, which suggested only modest effects on quality of life. However, the Children's Dermatology Life Quality Ind ...
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Journal ArticleRheumatology (Oxford) · April 1, 2018
OBJECTIVE: JDM is associated with multiple potential risk factors for cardiovascular disease, including reduced heart rate variability, systolic/diastolic cardiac dysfunction, abnormal brachial artery reactivity and metabolic syndrome. However, little is k ...
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ConferenceArthritis Care Res (Hoboken) · September 2017
OBJECTIVE: To determine the prevalence and risk factors for hospitalization with dermatomyositis and assess inpatient burden of dermatomyositis. METHODS: Data on 72,651,487 hospitalizations from the 2002-2012 Nationwide Inpatient Sample, a 20% stratified s ...
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Journal ArticleArthritis Care Res (Hoboken) · July 2017
OBJECTIVE: Localized scleroderma can negatively affect children's quality of life (QoL), but predictors of impact have not been well described. We sought to identify predictors of QoL impact in juvenile localized scleroderma patients. METHODS: We analyzed ...
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Journal ArticlePediatr Rheumatol Online J · June 13, 2017
BACKGROUND: The prognosis of children with juvenile dermatomyositis (JDM) has improved remarkably since the 1960's with the use of corticosteroid and immunosuppressive therapy. Yet there remain a minority of children who have refractory disease. Since 2003 ...
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Journal ArticleArthritis Care Res (Hoboken) · May 2017
OBJECTIVE: To assess the validity of using International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) code 710.3 to identify adult patients with dermatomyositis in outpatient and inpatient settings. METHODS: Electronic medic ...
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Journal ArticleBull Hosp Jt Dis (2013) · 2014
BACKGROUND: Standardized pediatric hospitalist and orthopaedic co-management of spinal fusion patients may improve quality processes and outcomes. This approach has not been studied in a general academic center. OBJECTIVE: Estimate relative effects and fea ...
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Journal ArticleJ Med Internet Res · June 30, 2008
BACKGROUND: The Internet is a significant source of medical information and is now being shown to be an important conduit for delivering various health-related interventions. OBJECTIVE: This paper aimed to examine the utility and impact of an Internet inte ...
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