Relationship of regional ultraviolet index data with rash and systemic disease activity in youth with childhood-onset systemic lupus: results from the Childhood Arthritis and Rheumatology Research Alliance Registry.

OBJECTIVE: To investigate the association between ultraviolet light index (UVI), as a marker for UV exposure, and seasonality with rash and systemic disease activity in youth with childhood-onset systemic lupus (cSLE) from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry. METHODS: We reviewed data on rash and disease activity from Systemic Lupus Erythematosus Disease Activity Index 2000 (SLEDAI-2 K) scores from cSLE CARRA Registry participants with visits between 2010 and 2019 and obtained zipcode level UVI data from the National Oceanic and Atmospheric Administration (NOAA). Our main exposures were UVI and season during the month of visit and one month prior to visit. We used mixed-effects logistic regression models to examine associations between regional UVI (by zipcode)/season and odds of rash and severe SLEDAI-2 K score (≥ 5 vs. 0-4), adjusting for age, sex, race and income. RESULTS: Among 1222 participants, with a mean of 2.3 visits per participant, 437 visits (15%) had rash and 860 (30%) had SLEDAI-2 K score ≥ 5. There were no associations between UVI during the month prior to visit or the month of the visit and odds of rash or elevated systemic activity. However, fall season was associated with increased odds of rash (OR = 1.59, p = 0.04), but not increased disease activity. CONCLUSION: This study found no association between UVI and rash or UVI and disease activity. However, further studies directly measuring UV exposure and accounting for patient-level protective behavioral measures may help to better understand the complex relationship between sun exposure and SLE disease activity.

Mental health in paediatric and adult myositis-related diseases: current state of research, interventions, and future steps from the MIHRA Psychological Impact Scientific Working Group.

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, with limited emphasis on idiopathic inflammatory myopathies (IIMs). High proportions of those with juvenile myositis report psychological distress at levels warranting mental health referral. Adults with dermatomyositis diagnosed with depression or anxiety do not receive adequate mental health care. Mental health symptoms in those with IIMs are associated with worse health-related quality of life, medication adherence, and disease outcomes. Despite demonstrated high rates of mental health burden, access to mental health care remains severely lacking.Data related to mental health burden is limited by small sample size, limited generalisability, variable methods of assessment, and inconsistent diagnosis codes to define mental health conditions. Additional research is needed to validate current screening tools in myositis populations. Other relevant measurable factors include disease severity, non-health- and health-related trauma exposure, loneliness, isolation, loss of control, sleep difficulties, fatigue, pain, self-esteem, body image, sexual health, and health inequities. Studiesare needed investigating the efficacy of therapeutic and pharmacologic interventions among patients with myositis who experience depression and anxiety. Currently, knowledge and resources are limited around mental health burden and potential intervention for those living with IIMs. The Myositis International Health & Research Collaborative Alliance (MIHRA) Psychological Impact Scientific Working Group offers a preliminary road map to characterise and prioritise the work ahead to understand baseline mental health burden and compare avenues for intervention.

Behavioral health outcomes and social determinants of health in children with diabetes and juvenile arthritis.

Objective: Children with chronic illnesses, including arthritis, are at increased risk for adverse psychosocial outcomes influenced by social determinants of health (SDOH). Comparing psychosocial outcomes in families affected by juvenile arthritis compared to other chronic illnesses may help identify areas in need of special attention vs areas that may be addressed through adopting other disease examples' care models. We examined child and parent behavioral health outcomes for families with juvenile arthritis compared to diabetes, accounting for SDOH. Methods: Secondary data analysis of the National Survey of Children's Health including 365 children (<18yrs) with arthritis and 571 children with diabetes. Psychosocial outcomes were depression, anxiety, ADHD, physical pain, behavioral problems, and treatment for mental health. School outcomes were school engagement, school absence, involvement in clubs/organization, and involvement in organized activities. Parent outcomes were family resilience, emotional support, coping with daily demands of raising a child, job change due to problems with childcare, and parent mental health. SDOH variables were food insecurity, food/cash assistance, unsafe neighborhood, detracting neighborhood elements, parent education, households earning <100% of the federal poverty line. Logistic regression analyses were utilized to examine variation in child and parent outcomes, variation in SDOH, and the role of SDOH. Results: Children with arthritis experienced significantly more physical pain, anxiety, depression, ADHD, and behavior problems compared to children with diabetes. Children with arthritis were more likely to see a mental health professional and get treatment for problems with emotions/behaviors. When considering SDOH, children with arthritis were still more likely to experience adverse psychosocial outcomes but were no longer more likely to get treatment. Children with arthritis had increased likelihood of school absence and were less involved in organized activities than children with diabetes. Parents of children with arthritis had poorer mental health than parents of children with diabetes. SDOH were more prevalent in children with arthritis than children with diabetes. Conclusions: Increased risk for adverse psychosocial outcomes in youth with arthritis compared to youth with diabetes indicates a need to mirror endocrinology models of care in rheumatology clinics. The role of SDOH highlights the need for regular SDOH screening in clinic.

Health Equity Implications of Missing Data Among Youths With Childhood-Onset Systemic Lupus Erythematosus: A Proof-of-Concept Study in the Childhood Arthritis and Rheumatology Research Alliance Registry.

OBJECTIVE: Health disparities in childhood-onset systemic lupus erythematosus (SLE) disproportionately impact marginalized populations. Socioeconomically patterned missing data can magnify existing health inequities by supporting inferences that may misrepresent populations of interest. Our objective was to assess missing data and subsequent health equity implications among participants with childhood-onset SLE enrolled in a large pediatric rheumatology registry. METHODS: We evaluated co-missingness of 12 variables representing demographics, socioeconomic position, and clinical factors (e.g., disease-related indices) using Childhood Arthritis and Rheumatology Research Alliance Registry childhood-onset SLE enrollment data (2015-2022; n = 766). We performed logistic regression to calculate odds ratios (ORs) and 95% confidence intervals (95% CIs) for missing disease-related indices at enrollment (Systemic Lupus Erythematosus Disease Activity Index 2000 [SLEDAI-2K] and/or Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index [SDI]) associated with data missingness. We used linear regression to assess the association between socioeconomic factors and SLEDAI-2K at enrollment using 3 analytic methods for missing data: complete case analysis, multiple imputation, and nonprobabilistic bias analyses, with missing values imputed to represent extreme low or high disadvantage. RESULTS: On average, participants were missing 6.2% of data, with over 50% of participants missing at least 1 variable. Missing data correlated most closely with variables within data categories (i.e., demographic). Government-assisted health insurance was associated with missing SLEDAI-2K and/or SDI scores compared to private health insurance (OR 2.04 [95% CI 1.22, 3.41]). The different analytic approaches resulted in varying analytic sample sizes and fundamentally conflicting estimated associations. CONCLUSION: Our results support intentional evaluation of missing data to inform effect estimate interpretation and critical assessment of causal statements that might otherwise misrepresent health inequities.

An ecological approach to understanding and addressing health inequities of systemic lupus erythematosus.

Systemic Lupus Erythematosus (SLE) is a complex chronic autoimmune disease disproportionally afflicting women and, in particular, American Indian/Alaska Native, Black, and Hispanic women. These groups of women have significantly worse SLE-related health outcomes which are partially attributable to their exposure to marginalizing and interconnecting social issues like racism, sexism, economic inequality, and more. Although these groups of women have higher rates of SLE and though it is well known that they are at risk of exposure to marginalizing social phenomena, relatively little SLE literature explicitly links and addresses the relationship between marginalizing social issues and poor SLE-health outcomes among these women. Therefore, we developed a community-engaged partnership with two childhood-SLE diagnosed women of color to identify their perspectives on which systemic issues impacted on their SLE health-related outcomes. Afterward, we used Cochrane guidelines to conduct a rapid review associated with these identified issues and original SLE research. Then, we adapted an ecological model to illustrate the connection between systems issues and SLE health outcomes. Finally, we provided recommendations for ways to research and clinically mitigate SLE health inequities.

Multicenter Study of Utility and Acceptability of Depression and Anxiety Screening in Adolescents and Young Adults With Childhood-Onset Systemic Lupus.

OBJECTIVE: To determine the utility and acceptability for depression and anxiety screening of adolescents and young adults (AYA) with childhood-onset systemic lupus erythematosus (cSLE) in the pediatric rheumatology setting. METHODS: AYA with cSLE, ages 12-21 years, from 8 collaborating sites, were consecutively screened for depression and anxiety with the Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder 7-item scale (GAD-7). Demographic and disease characteristics were collected, as well as patient-reported outcome measures using the Patient Reported Outcomes Measurement Information System (PROMIS) pediatric profile-25. Acceptability of screening was assessed with postscreening surveys completed by AYA and parents. Chi-square and Wilcoxon rank sum tests examined the relationship between patient characteristics and history of previous screening. Spearman correlations examined relationships between screening scores, PROMIS domains, and other disease factors. RESULTS: Among 106 AYA screened, 64 (60%) had been previously screened, 25 (24%) by general pediatricians. Thirty-two (30%) AYA screened positive, including 24% for depression, 17% for anxiety, and 14% for suicidal ideation. Depression and anxiety symptom severity were highly correlated with increased PROMIS domain scores for fatigue and pain interference and moderately correlated with increased pain severity, decreased mobility, and decreased peer relationships. Eighty-six percent of AYA and 95% of parents expressed comfort with screening in the pediatric rheumatology setting. CONCLUSION: Depression, anxiety, and suicidal ideation are common among AYA with cSLE, and symptoms are correlated with important patient-reported outcomes. Mental health screening in the pediatric rheumatology setting was highly acceptable among AYA with cSLE and their parents.

The Effect of Psychiatric Comorbidity on Healthcare Utilization for Youth With Newly Diagnosed Systemic Lupus Erythematosus.

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 Clinformatics Data Mart (OptumInsight). Youth aged 10 years to 24 years with an incident diagnosis of SLE (≥ 3 International Classification of Diseases, 9th revision, codes for SLE 710.0, > 30 days apart) were categorized as having: (1) a preceding psychiatric diagnosis in the year before SLE diagnosis, (2) an incident psychiatric diagnosis in the year after SLE diagnosis, or (3) no psychiatric diagnosis. We compared ambulatory, emergency, and inpatient visits in the year after SLE diagnosis, stratified by nonpsychiatric and psychiatric visits. We examined the effect of childhood-onset vs adult-onset SLE by testing for an interaction between age and psychiatric exposure on outcome. RESULTS: We identified 650 youth with an incident diagnosis of SLE, of which 122 (19%) had a preceding psychiatric diagnosis and 105 (16%) had an incident psychiatric diagnosis. Compared with those without a psychiatric diagnosis, youth with SLE and a preceding or incident psychiatric diagnosis had more healthcare use across both ambulatory and emergency settings for both nonpsychiatric and psychiatric-related care. These associations were minimally affected by age at time of SLE diagnosis. CONCLUSION: Psychiatric comorbidity is common among youth with newly diagnosed SLE and is associated with greater healthcare use. Interventions to address preceding and incident psychiatric comorbidity may decrease healthcare burden for youth with SLE.

Reproductive Health Care for Female Adolescents Prescribed Mycophenolate at a Children's Hospital: A 10-Year Retrospective Cohort Study.

OBJECTIVES: To describe female adolescents' reproductive health needs and subspecialists' teratogenic counseling at initiation of mycophenolate as well as use of reproductive health care and contraception after mycophenolate initiation. STUDY DESIGN: We searched health records for female patients aged 12-20 years prescribed mycophenolate from 2010 to 2019. We included 125 subjects, 72 with systemic lupus erythematosus, 27 with transplants, and 26 with other conditions. We reviewed all encounters with pediatric subspecialists and reproductive clinicians. We recorded counseling by subspecialists at mycophenolate initiation and compared rates pre- and post-Risk Evaluation and Mitigation Strategy (REMS). We recorded subjects' menstrual, sexual and pregnancy history, type of first highly effective contraceptive method used, and duration of use over the decade. RESULTS: At mycophenolate initiation, mean age was 16.8 ± 2.6 years; 72% Hispanic/Latina or Black. In total, 80% were postmenarchal, 28% ever had sex, 18% ever had a reproductive health care visit, 14% used highly effective contraception, and 7% were ever pregnant. Post-REMS vs pre-REMS, we found greater rates of counseling for teratogenicity (68% vs 32%, P < .001) and contraception (62% vs 32%, P < .001) and pregnancy testing (51% vs 24%, P < .01). Over the mean 4.9 ± 3.3 years' follow-up, 56% ever had sex; 59% ever attended a reproductive health care visit; 38% used highly effective contraception; and 10% had a pregnancy. CONCLUSIONS: Adolescents prescribed mycophenolate have ongoing unmet reproductive health care needs. Although many are sexually active, fewer use effective contraception. Teratogenicity counseling rates improved over the decade but not rates of referral for reproductive health care.

Disparities in Pediatric Rheumatic Diseases.

Health and health care disparities in pediatric rheumatology are prevalent among socially disadvantaged and marginalized populations based on race/ethnicity, socioeconomic position, and geographic region. These groups are more likely to experience greater disease severity, morbidity, mortality, decreased quality of life, and poor mental health outcomes, which are in part due to persistent structural and institutional barriers, including decreased access to quality health care. Most of the research on health and health care disparities in pediatric rheumatology focuses on juvenile idiopathic arthritis and childhood-onset systemic lupus erythematosus; there are significant gaps in the literature assessing disparities associated with other pediatric rheumatic diseases. Understanding the underlying causes of health care disparities will ultimately inform the development and implementation of innovative policies and interventions on a federal, local, and individual level.

American College of Rheumatology Guidance for the Management of Pediatric Rheumatic Disease During the COVID-19 Pandemic: Version 2.

OBJECTIVE: To provide clinical guidance to rheumatology providers who treat children with pediatric rheumatic disease (PRD) in the context of the coronavirus disease 2019 (COVID-19) pandemic. METHODS: The task force, consisting of 7 pediatric rheumatologists, 2 pediatric infectious disease physicians, 1 adult rheumatologist, and 1 pediatric nurse practitioner, was convened on May 21, 2020. Clinical questions and subsequent guidance statements were drafted based on a review of the queries posed by the patients as well as the families and healthcare providers of children with PRD. An evidence report was generated and disseminated to task force members to assist with 3 rounds of asynchronous, anonymous voting by email using a modified Delphi approach. Voting was completed using a 9-point numeric scoring system with predefined levels of agreement (categorized as disagreement, uncertainty, or agreement, with median scores of 1-3, 4-6, and 7-9, respectively) and consensus (categorized as low, moderate, or high). To be approved as a guidance statement, median vote ratings were required to fall into the highest tertile for agreement, with either moderate or high levels of consensus. RESULTS: To date, 39 guidance statements have been approved by the task force. Those with similar recommendations were combined to form a total of 33 final guidance statements, all of which received median vote ratings within the highest tertile of agreement and were associated with either moderate consensus (n = 5) or high consensus (n = 28). CONCLUSION: These guidance statements have been generated based on review of the available literature, indicating that children with PRD do not appear to be at increased risk for susceptibility to SARS-CoV-2 infection. This guidance is presented as a "living document," recognizing that the literature on COVID-19 is rapidly evolving, with future updates anticipated.

Association of Medication Access Difficulty and COVID-19-Related Distress With Disease Flares in Rheumatology Patients During the COVID-19 Pandemic.

OBJECTIVE: Due to concerns of infection and medication disruptions during the COVID-19 pandemic, rheumatology patients at the pandemic epicenter were at risk of distress and poor health outcomes. We sought to investigate medication disruptions and COVID-19-related distress in the Bronx, New York shortly after the peak of the pandemic and determine whether factors related to the pandemic were associated with flares, disease activity, and overall health. METHODS: In the month following the epidemic peak, we surveyed adult patients and parents of pediatric patients from rheumatology clinics in the Bronx regarding medication access, medication interruptions, COVID-19 infection, COVID-19 hospitalization, and COVID-19-related distress. We examined which factors were associated with patient-reported flares, disease activity, and overall health scores in regression models accounting for sociodemographic characteristics and rheumatologic disease type. RESULTS: Of the 1,692 patients and parents of pediatric patients that were contacted, 361 (21%) responded; 16% reported medication access difficulty, 14% reported medication interruptions, and 41% reported experiencing flare(s). In a multivariable logistic regression model, medication access difficulty was associated with increased odds of flare (odds ratio [OR] 4.0 [95% confidence interval (95% CI) 1.5, 10.4]; P = 0.005), as was high COVID-19-related distress (OR 2.4 [95% CI 1.2, 4.6]; P = 0.01). In multivariable linear regression models, medication access difficulty and high COVID-19-related distress were associated with worse disease activity scores, and high COVID-19-related distress was associated with worse health scores. CONCLUSION: Medication access difficulties and flares were common among rheumatology patients from the Bronx, New York in the month following the peak of the epidemic. Medication access difficulty and COVID-19-related distress were highly associated with flare and disease activity. COVID-19-related distress was associated with overall health scores.

Disparities in Childhood-Onset Lupus.

Disparities in prevalence, disease severity, physical and mental morbidity, and mortality exist in childhood-onset systemic lupus (cSLE) that lead to worse outcomes in children with systemic lupus erythematosus from socially disadvantaged backgrounds. Important gaps exist in knowledge regarding many individual race/ethnicities across the globe, the interaction between race/ethnicity and poverty, and drivers for identified disparities. Large cSLE registries will facilitate investigating disparities in groups of patients that have yet to be identified. Social-ecological models can inform approaches to investigate, monitor, and address disparities in cSLE.

American College of Rheumatology Guidance for the Management of Pediatric Rheumatic Disease During the COVID-19 Pandemic: Version 1.

OBJECTIVE: To provide clinical guidance to rheumatology providers who treat children with pediatric rheumatic disease (PRD) in the context of the coronavirus disease 2019 (COVID-19) pandemic. METHODS: The task force, consisting of 7 pediatric rheumatologists, 2 pediatric infectious disease physicians, 1 adult rheumatologist, and 1 pediatric nurse practitioner, was convened on May 21, 2020. Clinical questions and subsequent guidance statements were drafted based on a review of the queries posed by the patients as well as the families and healthcare providers of children with PRD. An evidence report was generated and disseminated to task force members to assist with 3 rounds of asynchronous, anonymous voting by email using a modified Delphi approach. Voting was completed using a 9-point numeric scoring system with predefined levels of agreement (categorized as disagreement, uncertainty, or agreement, with median scores of 1-3, 4-6, and 7-9, respectively) and consensus (categorized as low, moderate, or high). To be approved as a guidance statement, median vote ratings were required to fall into the highest tertile for agreement, with either moderate or high levels of consensus. RESULTS: The task force drafted 33 guidance statements, which were voted upon during the second and third rounds of voting. Of these 33 statements, all received median vote ratings within the highest tertile of agreement and were associated with either moderate consensus (n = 6) or high consensus (n = 27). Statements with similar recommendations were combined, resulting in 27 final guidance statements. CONCLUSION: These guidance statements have been generated based on review of the available literature, indicating that children with PRD do not appear to be at increased risk for susceptibility to SARS-CoV-2 infection. This guidance is presented as a "living document," recognizing that the literature on COVID-19 is rapidly evolving, with future updates anticipated.

Adverse Childhood Experiences Are Associated with Childhood-Onset Arthritis in a National Sample of US Youth: An Analysis of the 2016 National Survey of Children's Health.

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 examine whether ACEs are associated with disease-related characteristics among children with arthritis. STUDY DESIGN: In a cross-sectional analysis of data from the 2016 National Survey of Children's Health we examined whether ACEs were associated with having arthritis vs either being healthy or having a nonrheumatologic OCPD. ACE scores were categorized as 0, 1, 2-3, ≥4 ACEs. Multinomial logistic regression models examined associations between ACEs and health status while adjusting for age, sex, race/ethnicity, and poverty status. Among children with arthritis, associations between ACEs and disease-related characteristics were assessed by Pearson χ2 analyses. RESULTS: Compared with children with no ACEs, children with 1, 2-3, and ≥4 ACEs had an increased odds of having arthritis vs being healthy (adjusted OR for ≥4 ACEs, 9.4; 95% CI, 4.0-22.1) and vs OCPD (adjusted OR for ≥4 ACEs, 3.7; 95% CI-1.7, 8.1). Among children with arthritis, ACEs were associated with worse physical impairment. CONCLUSIONS: Children with higher numbers of ACEs are more likely to have arthritis, when arthritis status is compared either with being healthy or with having OCPD. Further studies are needed to determine the direction of the association between ACEs and childhood arthritis, its impact on disease course, and potential intervention targets that might mitigate these effects.

Prioritized Agenda for Mental Health Research in Pediatric Rheumatology from the Childhood Arthritis and Rheumatology Research Alliance Mental Health Workgroup.

OBJECTIVE: Mental health problems are prevalent in youth with rheumatologic disease. Gaps in knowledge exist regarding their effect, as well as strategies for detection and effective treatment. To address these gaps, the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Mental Health Workgroup developed and prioritized an agenda of research topics. METHODS: We systematically reviewed the literature and identified 5 major research domains in further need of study: (A) mental health burden and relationship to pediatric rheumatologic disease, (B) effect of mental health disorders on outcomes, (C) mental health awareness and education, (D) mental health screening, and (E) mental health treatment. Research topics within these areas were developed by workgroup leaders and refined by the workgroup. Members were surveyed to prioritize the topics by importance, feasibility of study, and actionability. RESULTS: Fifty-nine members (57%) completed the survey. Among the proposed research topics, 31/33 were rated as highly important and 4/33 were rated highly for importance, feasibility, and actionability. Topics rated most important related to (A) mental health burden and relationship to rheumatologic disease, and (B) the effect of mental health on outcomes. Topics rated most feasible and actionable were related to (D) mental health screening. CONCLUSION: Addressing gaps in knowledge regarding mental health in youth with rheumatologic disease is essential for improving care. We have identified high priority research topics regarding mental health of pediatric rheumatology patients in need of further investigation that are feasible to study and believed to lead to actionable results in patient care.

The case for open science: rare diseases.

The premise of Open Science is that research and medical management will progress faster if data and knowledge are openly shared. The value of Open Science is nowhere more important and appreciated than in the rare disease (RD) community. Research into RDs has been limited by insufficient patient data and resources, a paucity of trained disease experts, and lack of therapeutics, leading to long delays in diagnosis and treatment. These issues can be ameliorated by following the principles and practices of sharing that are intrinsic to Open Science. Here, we describe how the RD community has adopted the core pillars of Open Science, adding new initiatives to promote care and research for RD patients and, ultimately, for all of medicine. We also present recommendations that can advance Open Science more globally.

Validation of the Attention, Memory, and Frontal Abilities Screening Test (AMFAST).

The aim of this study is to validate the Attention, Memory, and Frontal Abilities Screening Test (AMFAST), a novel, 10-minute, paper-and-pencil measure developed to identify attention, processing speed, memory, and executive functioning deficits in children and adults with various conditions characterized by frontal-subcortical dysfunction. We administered the AMFAST to 186 English-speaking healthy control participants (aged 8-88 years) without reported cognitive impairment. The AMFAST was also administered to a mixed clinical sample that included 114 English-speaking individuals (aged 8-84 years) who also received comprehensive neuropsychological testing. Results indicated that total AMFAST scores in the healthy control sample were not significantly affected by education or gender. There was, however, a significant effect of age, as the 8- to 10-year-old group scored significantly lower than other age groups. Thus, only participants 11+ years were included in further analyses. The AMFAST demonstrated high test-retest and interrater reliabilities, good construct validity, and the identified optimal cutoff score of 70 had excellent sensitivity and specificity for differentiating between cognitively intact and cognitively impaired individuals. These findings demonstrate that the AMFAST is a highly effective screening test that can be used to identify attention, memory, processing speed, and executive functioning deficits in individuals from middle childhood through older adulthood.

Depression And Anxiety In Patients With Juvenile Idiopathic Arthritis: Current Insights And Impact On Quality Of Life, A Systematic Review.

Depression and anxiety are prevalent in children with rheumatologic diseases, including juvenile idiopathic arthritis (JIA). However, prevalence rates and the relationship with disease outcomes, including quality of life are conflicting in the early literature. To review the current literature, determine gaps in our knowledge, and identify areas in need of further investigation, we conducted a systematic review of studies examining depression and anxiety symptoms among children with JIA and the impact these symptoms may have on disease outcomes and quality of life. Six electronic databases were searched up until January 2019. Of 799 potential articles, 60 articles were included with the main focus on 28 articles from 2009 to 2019, to concentrate on the most current evidence. We found that JIA patients experience symptoms of depression and anxiety similar to other childhood chronic diseases and at higher rates than in healthy children. Patients who experience these symptoms have worse quality of life, with some evidence pointing to depression and anxiety symptoms having a greater impact on quality of life than other disease features, such as active joint count. Family members of JIA patients experience high rates of anxiety and depression symptoms which may impact their child's mental health and pain symptoms related to JIA. Conflicting reports of associations between depression/anxiety symptoms and disease features/disease outcomes and a paucity of longitudinal studies investigating the impact of treatment on mental health symptoms indicate areas in need of further research to effectively identify patients at greatest risk of depression and anxiety and to better understand how to treat and prevent these symptoms in youth with JIA. Family mental health should also be considered in investigations concerning mental health and disease outcomes of children with JIA.

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

OBJECTIVE: Prompt treatment for lupus is important to prevent morbidity. A potential barrier to early treatment of pediatric lupus is delayed presentation to a pediatric rheumatologist. To better understand factors contributing to delayed presentation among pediatric lupus patients, we examined differences in demographic and clinical characteristics of lupus patients within the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry with regard to time between symptom onset and presentation to a pediatric rheumatologist. METHODS: We analyzed data from 598 CARRA Legacy Registry participants for differences between those who presented early (within <1 month of symptom onset), between 1-3 months (typical presentation), with moderate delays (3-12 months), and with severe delays (≥1 year). Factors associated with early presentation, moderate delay, and severe delay were determined by multinomial logistic regression. RESULTS: Forty-four percent of patients presented early, while 23% had moderate delays and 9% had severe delays. Family history of lupus, absence of discoid rash, and location in a state with a higher density of pediatric rheumatologists were associated with earlier presentation. Younger age, low household income (<$25,000 per year), and a family history of lupus were associated with severe delay. CONCLUSION: Delays to care ≥1 year exist in a notable minority of pediatric lupus patients from the CARRA Legacy Registry. In this large and diverse sample of patients, access to care and family resources played an important role in predicting time to presentation to a pediatric rheumatologist.