Publications by authors named "Rosalind Ramsey-Goldman"

Coronavirus disease 2019 (COVID-19) vaccine uptake among individuals with rheumatic conditions remains low despite heightened risk for related adverse outcomes. This is especially pronounced among historically marginalized populations who suffered disproportionately from the COVID-19 pandemic. Among the myriad of reasons for low vaccine uptake, mistrust in the healthcare system, misinformation related to the vaccine development process, fear of rheumatic disease flares, and inconsistent physician recommendations, are highlighted.

View Article and Find Full Text PDF
Article Synopsis
  • Some experts and patients worked together to create a set of important data to help study childhood lupus, a disease that affects children.
  • They made two datasets: a Core Dataset with 46 necessary items and an Expanded Dataset with 26 extra items, to help gather more information.
  • This new information will help researchers around the world study childhood lupus better by using the same important facts and details.
View Article and Find Full Text PDF
Article Synopsis
  • The study examines how both medical and personal readiness for pregnancy affect various aspects of maternal health in women with systemic lupus erythematosus (SLE).
  • Medical readiness is linked to disease activity and pregnancy outcomes, while personal readiness correlates with a patient's perception of their disease and their mental health.
  • The findings suggest that improving medical readiness prior to conception can enhance pregnancy outcomes, while addressing unplanned pregnancies may benefit maternal mental health.
View Article and Find Full Text PDF

Introduction: Inequities in COVID-19 infection and vaccine uptake among historically marginalised racial and ethnic groups in the USA persist. Individuals with rheumatic conditions, especially those who are immunocompromised, are especially vulnerable to severe infection, with significant racialised inequities in infection outcomes and in vaccine uptake. Structural racism, historical injustices and misinformation engender racial and ethnic inequities in vaccine uptake.

View Article and Find Full Text PDF
Article Synopsis
  • - The study aimed to update the 1998 Systemic Lupus Erythematosus (SLE) Core Outcome Set by evaluating existing domains and generating new ones, involving both patients and collaborators in the process.
  • - A survey collected responses from 100 patients and 145 collaborators, revealing that patients focused on life-impact domains while collaborators emphasized clinical aspects, highlighting a need for balanced input from both groups.
  • - Findings showed agreement on some domains for inclusion in the updated SLE Core Outcome Set, while also identifying areas that need more explanation and suggesting new domains for consideration.
View Article and Find Full Text PDF

Objectives: This study aims to determine the independent impact of definitions of remission/low disease activity (LDA) on direct/indirect costs (DCs, ICs) in a multicentre inception cohort.

Methods: Patients from 31 centres in 10 countries were enrolled within 15 months of diagnosis and assessed annually. Five mutually exclusive disease activity states (DAS) were defined as (1) remission off-treatment: clinical (c) SLEDAI-2K=0, without prednisone/immunosuppressants; (2) remission on-treatment: cSLEDAI-2K=0, prednisone ≤5 mg/day and/or maintenance immunosuppressants; (3) LDA-Toronto Cohort (TC): cSLEDAI-2K≤2, without prednisone/immunosuppressants; (4) modified lupus LDA state (mLLDAS): SLEDAI-2K≤4, no activity in major organs/systems, no new activity, prednisone ≤7.

View Article and Find Full Text PDF

Objective: Social determinants of health (SDoH) likely contribute to outcome disparities in lupus nephritis (LN). Understanding the overall burden and contribution of each domain could guide future health equity-focused interventions to improve outcomes and reduce disparities in LN. Objectives of this meta-analysis were to 1) determine the association of overall SDoH and specific SDoH domains on LN outcomes and 2) develop a framework for the multidimensional impact of SDoH on LN outcomes.

View Article and Find Full Text PDF
Article Synopsis
  • Cranial neuropathies (CN) are a rare manifestation of neuropsychiatric lupus, and the study investigates the association of anti-KIF20B antibodies as a possible biomarker for this condition within a large cohort of SLE patients.
  • The research involved 795 patients from a larger cohort, revealing that 29.8% were positive for anti-KIF20B, with a significantly higher positivity rate (70%) in those with CN compared to those without (29.3%).
  • Findings suggest that anti-KIF20B positivity is linked to CN in SLE patients, indicating its potential as a biomarker, though further research is required to confirm these results.
View Article and Find Full Text PDF

Objective: Accurately translated health materials are needed to achieve equity in vaccine uptake among U.S. individuals with non-English language preferences.

View Article and Find Full Text PDF

Background: Systemic lupus erythematosus (SLE) is a rare autoimmune disorder characterized by an unpredictable course of flares and remission with diverse manifestations. Lupus nephritis, one of the major disease manifestations of SLE for organ damage and mortality, is a key component of lupus classification criteria. Accurately identifying lupus nephritis in electronic health records (EHRs) would therefore benefit large cohort observational studies and clinical trials where characterization of the patient population is critical for recruitment, study design, and analysis.

View Article and Find Full Text PDF

Background: The Outcome Measures in Rheumatology (OMERACT) Systemic Lupus Erythematosus (SLE) Working Group held a Special Interest Group (SIG) at the OMERACT 2023 conference in Colorado Springs where SLE collaborators reviewed domain sub-themes generated through qualitative research and literature review.

Objective: The objective of the SIG and the subsequent meetings of the SLE Working Group was to begin the winnowing and binning of candidate domain sub-themes into a preliminary list of candidate domains that will proceed to the consensus Delphi exercise for the SLE COS.

Methods: Four breakout groups at the SLE SIG in Colorado Springs winnowed and binned 132 domain sub-themes into candidate domains, which was continued with a series of virtual meetings by an advisory group of SLE patient research partners (PRPs), members of the OMERACT SLE Working Group Steering Committee, and other collaborators.

View Article and Find Full Text PDF

Objective: To assess outcomes related to Lupus Therapeutics' Patient Advocates for Lupus Studies (LT-PALS), a peer-to-peer lupus clinical trial (LCT) education program designed to improve representation of diverse groups in LCTs. Patients with lupus and clinical trial participation experience were trained as peer educators (PALs) providing trial-agnostic education to trial-naive patients with lupus.

Methods: We used a two-arm, randomized pretest/posttest study design to evaluate outcomes related to LCT participation: knowledge, attitudes, self-efficacy, and intentions to participate in an LCT.

View Article and Find Full Text PDF
Article Synopsis
  • - The study aimed to evaluate algorithms for detecting features of Systemic Lupus Erythematosus (SLE) using electronic health record data from the Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN).
  • - It found that patients with more SLE-related clinical encounters had significantly more positively identified SLE criteria domains, especially when data from multiple healthcare sites were analyzed.
  • - The results indicate that these algorithms are effective in identifying SLE characteristics and highlight the advantages of using aggregated data from various institutions for enhanced detection.
View Article and Find Full Text PDF

Objective: The goals of this study were to assess the associations of severe nonadherence to hydroxychloroquine (HCQ), objectively assessed by HCQ serum levels, and risks of systemic lupus erythematosus (SLE) flares, damage, and mortality rates over five years of follow-up.

Methods: The Systemic Lupus International Collaborating Clinics (SLICC) Inception Cohort is an international multicenter initiative (33 centers throughout 11 countries). The serum of patients prescribed HCQ for at least three months at enrollment were analyzed.

View Article and Find Full Text PDF

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.

View Article and Find Full Text PDF

Objectives: A novel longitudinal clustering technique was applied to comprehensive autoantibody data from a large, well-characterised, multinational inception systemic lupus erythematosus (SLE) cohort to determine profiles predictive of clinical outcomes.

Methods: Demographic, clinical and serological data from 805 patients with SLE obtained within 15 months of diagnosis and at 3-year and 5-year follow-up were included. For each visit, sera were assessed for 29 antinuclear antibodies (ANA) immunofluorescence patterns and 20 autoantibodies.

View Article and Find Full Text PDF

SLE is a global health concern that unevenly affects certain ethnic/racial groups. Individuals of Asian, Black, Hispanic and Indigenous ethnicity/race are amongst those who experience increased prevalence, incidence, morbidity and mortality. Population-based surveillance studies from many regions are few and often still in nascent stages.

View Article and Find Full Text PDF

Objective: To estimate direct and indirect costs associated with neuropsychiatric (NP) events in the Systemic Lupus International Collaborating Clinics inception cohort.

Methods: NP events were documented annually using American College of Rheumatology definitions for NP events and attributed to systemic lupus erythematosus (SLE) or non-SLE causes. Patients were stratified into 1 of 3 NP states (no, resolved, or new/ongoing NP event).

View Article and Find Full Text PDF
Article Synopsis
  • The study looked at how hydroxychloroquine (HCQ), a medicine for lupus, affects the eyes over a long time.
  • Researchers followed 1,460 lupus patients from 1999 to 2019 and found that only 11 patients had eye problems related to HCQ.
  • The study suggests that people who've been on HCQ for more than 10 years, those who take higher doses, and older patients should have regular eye checks to catch any potential issues.
View Article and Find Full Text PDF
Article Synopsis
  • An international survey was conducted among patients with Systemic Lupus Erythematosus (SLE) to evaluate their access to and trust in health information sources before and during the COVID-19 pandemic.
  • Results showed a decline in the use of lupus specialists and family physicians as information sources, while access to news and social media increased during the pandemic.
  • A significant portion of respondents (17.2%) experienced negative effects from the information they obtained through news and social media, with various demographics influencing their information-seeking behaviors and experiences.
View Article and Find Full Text PDF

A PHP Error was encountered

Severity: Warning

Message: fopen(/var/lib/php/sessions/ci_session7ldn7jlvvbufbpl9orq8i91vcerm1n9n): Failed to open stream: No space left on device

Filename: drivers/Session_files_driver.php

Line Number: 177

Backtrace:

File: /var/www/html/index.php
Line: 316
Function: require_once

A PHP Error was encountered

Severity: Warning

Message: session_start(): Failed to read session data: user (path: /var/lib/php/sessions)

Filename: Session/Session.php

Line Number: 137

Backtrace:

File: /var/www/html/index.php
Line: 316
Function: require_once