Understanding Stakeholders' Perspectives to Increase COVID-19 Vaccine and Booster Uptake Among Black Individuals With Rheumatic Conditions.

OBJECTIVE: Disparities in COVID-19 vaccine and booster uptake persist. This study aimed to obtain perspectives from community and physician stakeholders on COVID-19 vaccine and booster hesitancy and strategies to promote vaccine uptake among Black individuals with rheumatic and musculoskeletal conditions. METHODS: We invited community leaders and physicians in greater Boston and Chicago to participate in semi-structured interviews using a moderator guide developed a priori. Participants were queried about how to best address vaccine hesitancy, strategies to target high-risk populations, and factors to identify future community leaders. Interviews were audio recorded, transcribed verbatim, and analyzed thematically using Dedoose. RESULTS: A total of 8 physicians and 12 community leaders participated in this study between November 2021 and October 2022. Qualitative analyses revealed misinformation/mixed messaging and mistrust, with subthemes including conspiracy theories, concerns regarding vaccine development and function, racism and historical injustices, and general mistrust of health care systems as the top cited reasons for COVID-19 vaccine hesitancy. Participants also shared demographic-specific differences, such as race, ethnicity, age, and gender that influenced the identified themes, with emphasis on COVID-19 vaccine access and apathy. Strategies for community-based vaccine-related information dissemination included personal storytelling with an iterative and empathetic approach, while recognizing the importance of protecting community leader well-being. CONCLUSION: To increase vaccine uptake among Black individuals with rheumatic conditions, strategies should acknowledge and respond to racial/ethnic and socioeconomic injustices that engender vaccine hesitancy. Messaging should be compassionate, individually tailored, and recognize heterogeneity in experiences and opinions. Results from these analyses will inform a planned community-based intervention in Boston and Chicago.

Community-Engaged Research: Leveraging Community-Academic Partnerships to Reduce Disparities and Inequities in Lupus Care.

Community-engaged research is an effective tool to address health care disparities and inequities in lupus care. Community-based participatory research allows the highest degree of community engagement, but may be limited by the challenges associated with long-term funding and implementation. Community-academic partnerships are a feasible way to allow for varying degrees of community engagement and develop sustainable infrastructure. Two examples of community-engaged research in rheumatology are MONARCAS and Lupus Conversations.

Using Critical Race Theory to Understand Trial Participation Among Black Individuals With Systemic Lupus Erythematosus: A Qualitative Study of Patients and Caregivers.

OBJECTIVE: Black patients with systemic lupus erythematous (SLE) experience greater disease incidence and severity than White patients, and yet they are underrepresented in SLE clinical trials. We applied Critical Race Theory to qualitatively explore the influence of racism on the underrepresentation of Black patients in SLE clinical trials and to develop a framework for future intervention. METHODS: We conducted focus group sessions in Chicago and Boston with Black adults (ages ≥18 years) with SLE and their caregivers. We queried the participants about their knowledge regarding clinical trials, factors that might motivate or hinder trial participation, and how race and experiences of racism might impact clinical trial participation. Focus group responses were transcribed verbatim and analyzed thematically. RESULTS: We held 4 focus groups (n = 31 participants); 20 participants had SLE, and 11 were caregivers. All participants were Black, 90% were women, and the mean age was 54 years. Qualitative analyses revealed several themes that negatively impact trial participation, including mistrust related to racism, concerns about assignment to placebo groups, strict study exclusion criteria, and SLE-related concerns. Factors that motivated trial participation included recommendations from physicians and reputable institutions, a desire to help the greater good, and culturally sensitive marketing of trials. CONCLUSION: Actions to improve clinical trial participation among Black individuals should focus on reframing how trial information is presented and disseminated and on reevaluating barriers that may restrict trial participation. Additionally, researchers must acknowledge and respond to the presence of racial bias in health care. Community-academic partnerships may help build trust and reduce fears of mistreatment among Black individuals with SLE.

Evaluation of structured data from electronic health records to identify clinical classification criteria attributes for systemic lupus erythematosus.

OBJECTIVE: Our objective was to develop algorithms to identify lupus clinical classification criteria attributes using structured data found in the electronic health record (EHR) and determine whether they could be used to describe a cohort of people with lupus and discriminate them from a defined healthy control cohort. METHODS: We created gold standard lupus and healthy patient cohorts that were fully adjudicated for the American College of Rheumatology (ACR), Systemic Lupus International Collaborating Clinics (SLICC) and European League Against Rheumatism/ACR (EULAR/ACR) classification criteria and had matched EHR data. We implemented rule-based algorithms using structured data within the EHR system for each attribute of the three classification criteria. Individual criteria attribute and classification criteria algorithms as a whole were assessed over our combined cohorts and the overall performance of the algorithms was measured through sensitivity and specificity. RESULTS: Individual classification criteria attributes had a wide range of sensitivities, 7% (oral ulcers) to 97% (haematological disorders) and specificities, 56% (haematological disorders) to 98% (photosensitivity), but all could be identified in EHR data. In general, algorithms based on laboratory results performed better than those primarily based on diagnosis codes. All three classification criteria systems effectively distinguished members of our case and control cohorts, but the SLICC criteria-based algorithm had the highest overall performance (76% sensitivity, 99% specificity). CONCLUSIONS: It is possible to characterise disease manifestations in people with lupus using classification criteria-based algorithms that assess structured EHR data. These algorithms may reduce chart review burden and are a foundation for identifying subpopulations of patients with lupus based on disease presentation to support precision medicine applications.

Assessing the Concordance of Clinical Classification Criteria for Lupus Between Electronic Health Records and a Physician Curated Registry.

We developed a computable phenotype for systemic lupus erythematosus (SLE) based on the Systemic Lupus International Collaborative Clinics clinical classification criteria set for SLE. We evaluated the phenotype over registry and EHR data for the same patient population to determine concordance of criteria detected in both datasets and to assess which types of structured data detected individual classification criteria. We identified a concordance of 68% between registry and EHR data relying solely on structured data.

Addressing Lupus Health Disparities: The MONARCAS Community and Academic Collaborative Program.

Purpose: The Centers for Disease Control (CDC) Popular Opinion Leader (POL) model was implemented in a lupus education program (MONARCAS) for the Latino community. The program aim was to increase lupus awareness by training high school students, community health workers, and parents. Methods: A curriculum was developed training POLs to disseminate concepts about lupus signs and symptoms. Pre- and post-program questions assessed lupus knowledge and message dissemination. Results: POL groups represented distinct demographic characteristics with Spanish or English language dominance. POLs reported increased lupus knowledge and program satisfaction. Conclusions: Future program goals should aim to increase understanding and improving access to care for Latino communities affected by lupus.

Disease Outcomes and Care Fragmentation Among Patients With Systemic Lupus Erythematosus.

OBJECTIVE: To examine the impact of care fragmentation across multiple health care institutions on disease outcomes in patients with systemic lupus erythematosus (SLE). METHODS: Using the Chicago HealthLNK Data Repository, an assembly of electronic health records from 6 institutions, we identified patients with SLE, using International Classification of Diseases, Ninth Revision (ICD-9) codes, whose care was delivered at more than 1 organization. We examined whether patients had severe infections or comorbidities (ICD-9 code defined) that indicated SLE-induced damage. T-tests and chi-square tests were used to examine differences between fragmentation groups. Logistic regression was used to assess factors contributing to the occurrence of disease outcomes. RESULTS: We identified 4,276 patients with SLE. A total of 856 (20%) received care from more than 1 health care institution. African American patients and patients with public insurance were more likely to experience care fragmentation compared to white and private insurance patients (odds ratio [OR] 1.66, 95% confidence interval [95% CI] 1.44-1.97 and OR 1.63, 95% CI 1.42-1.95). We identified increased risk of infections (OR 1.57, 95% CI 1.30-1.88), cardiovascular disease (OR 1.51, 95% CI 1.23-1.86), end-stage renal disease (OR 1.34, 95% CI 1.05-1.70), nephritis (OR 1.28, 95% CI 1.07-1.54), and stroke (OR 1.28, 95% CI 1.01-1.62) among patients with fragmented care, adjusted for age, sex, race, insurance status, length of followup time, and total visit count. CONCLUSION: In this cross-site cohort of SLE patients, care fragmentation is associated with increased risk of severe infection and comorbidities. These results suggest that improved health information exchange could positively impact outcomes for SLE patients.

Time-location patterns of a diverse population of older adults: the Multi-Ethnic Study of Atherosclerosis and Air Pollution (MESA Air).

The primary aim of this analysis was to present and describe questionnaire data characterizing time-location patterns of an older, multiethnic population from six American cities. We evaluated the consistency of results from repeated administration of this questionnaire and between this questionnaire and other questionnaires collected from participants of the Multi-Ethnic Study of Atherosclerosis and Air Pollution (MESA Air). Participants reported spending most of their time inside their homes (average: 121 h/week or 72%). More than 50% of the participants reported spending no time in several of the location options, including at home outdoors, at work/volunteer/school locations indoors or outdoors, or in "other" locations outdoors. We observed consistency between self-reported time-location patterns from repeated administration of the time-location questionnaire and compared with other survey instruments. Comparisons with national cohorts demonstrated the differences in time-location patterns in the MESA Air cohort due to differences in demographics, but the data showed similar trends in patterns by age, gender, season, and employment status. This study was the first to explicitly examine the time-location patterns in an older, multiethnic population and the first to add data on Chinese participants. These data can be used to inform future epidemiological research of MESA Air and other studies that include diverse populations.

Síndrome nefrótico idiopático: recomendaciones de la Rama de Nefrología de la Sociedad Chilena de Pediatría. Parte 2 / Idiopathic Nephrotic Syndrome: recommendations of the Nephrology Branch of the Chilean Society of Pediatrics. Part two

El síndrome nefrótico idiopático es la glomerulopatía más frecuente en la infancia, afecta a 1-3/100 mil niños menores de 16 años y se presenta con más frecuencia entre los 2 y 10 años. Su causa es desconocida, y la mayoría de las veces responde a corticoides, con buen pronóstico a largo plazo. El síndrome nefrótico corticorresistente representa un 10-20% de los síndromes nefróticos idiopáticos en pediatría. Tiene mal pronóstico, y su manejo constituye un desafío terapéutico significativo. La mitad de los pacientes evoluciona a insuficiencia renal crónica terminal en un plazo de 5 años, estando expuestos además a las complicaciones secundarias a un síndrome nefrótico persistente y a efectos adversos de la terapia inmunosupresora. El objetivo fundamental del tratamiento es conseguir una remisión completa, pero una remisión parcial se asocia a una mejor sobrevida renal que la falta de respuesta. Este documento surgió de un esfuerzo colaborativo de la Rama de Nefrología de la Sociedad Chilena de Pediatría con el objetivo de ayudar a los pediatras y nefrólogos infantiles en el tratamiento del síndrome nefrótico idiopático en pediatría. En esta segunda parte, se discute el manejo del síndrome nefrótico corticorresistente, así como de las terapias no específicas.

Idiopathic nephrotic syndrome is the most common glomerular disease in childhood, affecting 1 to 3 per 100,000 children under the age of 16. It most commonly occurs in ages between 2 and 10. Its cause is unknown, and its histology corresponds to minimal change disease in 90% of cases, or focal segmental glomerulosclerosis. Steroid-resistant nephrotic syndrome represents 10-20% of idiopathic nephrotic syndrome in pediatrics. It has a poor prognosis, and its management is a significant therapeutic challenge. Half of patients evolve to end-stage renal disease within 5 years, and are additionally exposed to complications secondary to persistent NS and to the adverse effects of immunosuppressive therapy. The primary goal of treatment is to achieve complete remission, but even a partial remission is associated with a better renal survival than the lack of response. This paper is the result of the collaborative effort of the Nephrology Branch of the Chilean Society of Pediatrics with aims at helping pediatricians and pediatric nephrologists to treat pediatric idiopathic nephrotic syndrome. In this second part, handling of steroid-resistant nephrotic syndrome as well as nonspecific therapies are discussed.

[Idiopathic Nephrotic Syndrome: recommendations of the Nephrology Branch of the Chilean Society of Pediatrics. Part One]. / Síndrome nefrótico idiopático: recomendaciones de la Rama de Nefrología de la Sociedad Chilena de Pediatría. Parte 1.

Idiopathic nephrotic syndrome is the most common glomerular disease in childhood, affecting 1 to 3 per 100,000 children under the age of 16. It most commonly occurs in ages between 2 and 10. Its cause is unknown and its histology corresponds to minimal change disease in 90% of cases, or focal segmental glomerulosclerosis. 80 to 90% of cases respond to steroids (steroid-sensitive nephrotic syndrome) with good prognosis and long-term preservation of renal function over time. 70% of patients with SSNS have one or more relapses in their evolution, and of these, 50% behave as frequent relapsing or steroid-dependent, a group that concentrate the risk of steroid toxicity. Patients with steroid-resistant nephrotic syndrome have a poor prognosis and 50% of them evolve to end-stage renal disease. The goal of therapy is to induce and maintain remission of the disease, reducing the risk secondary to proteinuria while minimizing the adverse effects of treatments, especially with prolonged use of corticosteroids. This paper is the result of the collaborative effort of the Nephrology Branch of the Chilean Society of Pediatrics with aims at helping pediatricians and pediatric nephrologists to treat pediatric SNI. In this first part, recommendations of steroid-sensitive nephrotic syndrome are discussed.

[Idiopathic Nephrotic Syndrome: recommendations of the Nephrology Branch of the Chilean Society of Pediatrics. Part two]. / Síndrome nefrótico idiopático: recomendaciones de la Rama de Nefrología de la Sociedad Chilena de Pediatría. Parte 2.

Idiopathic nephrotic syndrome is the most common glomerular disease in childhood, affecting 1 to 3 per 100,000 children under the age of 16. It most commonly occurs in ages between 2 and 10. Its cause is unknown, and its histology corresponds to minimal change disease in 90% of cases, or focal segmental glomerulosclerosis. Steroid-resistant nephrotic syndrome represents 10-20% of idiopathic nephrotic syndrome in pediatrics. It has a poor prognosis, and its management is a significant therapeutic challenge. Half of patients evolve to end-stage renal disease within 5 years, and are additionally exposed to complications secondary to persistent NS and to the adverse effects of immunosuppressive therapy. The primary goal of treatment is to achieve complete remission, but even a partial remission is associated with a better renal survival than the lack of response. This paper is the result of the collaborative effort of the Nephrology Branch of the Chilean Society of Pediatrics with aims at helping pediatricians and pediatric nephrologists to treat pediatric idiopathic nephrotic syndrome. In this second part, handling of steroid-resistant nephrotic syndrome as well as nonspecific therapies are discussed.

Una lesión en el cintigrama renal DMSA 6 meses post fase aguda de una pielonefritis representa siempre una cicatriz: un debate abierto / Evolution of scintigraphic renal lesions in children after an episode of acute pyelonephritis

Background: Abnormal Dimercaptosuccinic acid (DMSA) renal scintigraphy performed six months after an acute pyelonephritis (AP) is generally interpreted as scarring. Aim: To perform a follow up of childhood patients showing scintigraphic renal lesions during the acute phase of pyelonephritis (within 7 days from the beginning of fever). Material and Methods: A scintigraphic control was carried out at 5-7 months and, in case of persistent lesions, an additional late scintigraphy at 10-13 months. All patients were followed clinically for one year and those with a relapse of urinary tract infection were excluded from the study. Results: Eighty five patients with a median age of 8 months were included. Among these, the first scintigraphic control was normal in 59 (69%) and abnormal in 26 patients (31%). In five of these 26 patients (5/26:19%-5/85: 6%), a considerable regression of the lesions was obvious on the early control, and normalized completely on the late control. When expressing the results in kidney units, 107 showed lesions during the acute phase of infection; 69% was normal at the early control. Thirty three showed lesions persisting at the early control (31%) and 7 out of these 33 (21%) became normal on the late control (7/107: 7%). In total, 25% of the children included in the study (24% of the kidney units) remained with renal sequelae one year after the initial episode of AP. Conclusions: The persistence of scintigraphic lesions six months after an episode of AP, does not necessarily correspond to permanent scars, since normalization can sometimes be observed on late controls.

[Evolution of scintigraphic renal lesions in children after an episode of acute pyelonephritis]. / Una lesión en el cintigrama renal DMSA 6 meses post fase aguda de una pielonefritis representa siempre una cicatriz: un debate abierto.

BACKGROUND: Abnormal Dimercaptosuccinic acid (DMSA) renal scintigraphy performed six months after an acute pyelonephritis (AP) is generally interpreted as scarring. AIM: To perform a follow up of childhood patients showing scintigraphic renal lesions during the acute phase of pyelonephritis (within 7 days from the beginning of fever). MATERIAL AND METHODS: A scintigraphic control was carried out at 5-7 months and, in case of persistent lesions, an additional late scintigraphy at 10-13 months. All patients were followed clinically for one year and those with a relapse of urinary tract infection were excluded from the study. RESULTS: Eighty five patients with a median age of 8 months were included. Among these, the first scintigraphic control was normal in 59 (69%) and abnormal in 26 patients (31%). In five of these 26 patients (5/26:19%-5/85: 6%), a considerable regression of the lesions was obvious on the early control, and normalized completely on the late control. When expressing the results in kidney units, 107 showed lesions during the acute phase of infection; 69% was normal at the early control. Thirty three showed lesions persisting at the early control (31%) and 7 out of these 33 (21%) became normal on the late control (7/107: 7%). In total, 25% of the children included in the study (24% of the kidney units) remained with renal sequelae one year after the initial episode of AP. CONCLUSIONS: The persistence of scintigraphic lesions six months after an episode of AP, does not necessarily correspond to permanent scars, since normalization can sometimes be observed on late controls.