Publications by authors named "Shilpa Venkatachalam"
Generating Real-World Evidence From the Excellence Network in Rheumatology.
Pharmacoepidemiol Drug Saf
December 2024
Purpose: The Excellence Network in RheumatoloGY (ENRGY) was founded in 2021 and encompasses data from more than 700 private practice rheumatology providers throughout the United States, forming a practice-based research network (PBRN).
Methods: Electronic health record (EHR) data from participating practices are aggregated, including structured data (e.g.
Objective: We sought to identify (1) what types of information US adults with rheumatic and musculoskeletal diseases (RMD) perceive as most important to know about their disease, and (2) what functions they would use in an RMD-specific smartphone app.
Methods: Nominal groups with patients with RMD were conducted using online tools to generate a list of needed educational topics. Based on nominal group results, a survey with final educational items was administered online, along with questions about desired functions of a smartphone app for RMD and wearable use, to patients within a large community rheumatology practice-based research network and the PatientSpot registry.
Article Synopsis
- The study focuses on using digital health tools, including electronic patient reported outcomes (ePROs), wearables, and clinical data, to gain a better understanding of patient health, particularly in rheumatoid arthritis (RA).
- Newly recruited patients on specific medications will have their health monitored over three to six months through physician data, self-reported ePROs via a mobile app, and passive biometric data from wearables.
- The analysis will reveal how these different types of data correlate and affect patient outcomes, while also showcasing the effectiveness of digital data collection for remote monitoring of patients with rheumatic diseases.
Healthcare disparities: patients' perspectives on barriers to joint replacement.
BMC Musculoskelet Disord
December 2023
Objective: Racial and ethnic disparities in arthroplasty utilization are evident, but the reasons are not known. We aimed to identify concerns that may contribute to barriers to arthroplasty from the patient's perspective.
Methods: We identified patients' concerns about arthroplasty by performing a mixed methods study.
Background: Digital health studies using electronic patient-reported outcomes (ePROs) and wearables bring new challenges, including the need for participants to consistently provide trial data.
Objective: This study aims to characterize the engagement, protocol adherence, and data completeness among participants with rheumatoid arthritis enrolled in the Digital Tracking of Arthritis Longitudinally (DIGITAL) study.
Methods: Participants were invited to participate in this app-based study, which included a 14-day run-in and an 84-day main study.
COVID-19 Vaccine Uptake, Hesitancy, and Flare in a Large Rheumatology Practice Network.
Arthritis Care Res (Hoboken)
January 2024
Article Synopsis
- The study aimed to evaluate COVID-19 vaccine uptake, reasons for hesitancy, and self-reported disease flare in a large network of rheumatology practices.
- Out of 61,158 patients surveyed, 89% had received at least one vaccine dose, but those with autoimmune and inflammatory rheumatic diseases (AIIRDs) were less likely to be vaccinated and more hesitant compared to those without AIIRDs.
- Main reasons for hesitancy included safety concerns and side effects, while a lack of physician recommendation was a key factor for booster hesitancy; however, having AIIRD did not lead to higher rates of self-reported disease flare after vaccination.
Introduction: The impact of upadacitinib on rheumatoid arthritis (RA) symptoms was evaluated during the first 12 weeks of treatment via patient-reported outcomes (PROs) using a mobile health application (app).
Methods: Participating rheumatologists from the CorEvitas RA Registry (prospective, observational cohort) recruited patients with RA initiating upadacitinib treatment. A modified version of the ArthritisPower® app was used to collect PROs, including the Routine Assessment of Patient Index Data 3 (RAPID3), duration of morning joint stiffness, and the Patient-Reported Outcomes Measurement Information System (PROMIS)-Fatigue 7a Short Form at baseline and weeks 1-4, 8, and 12.
Objective: Uptake of treat-to-target (TTT) strategies for rheumatoid arthritis (RA) management is low. Our objective was to understand the heterogeneity in patients' conceptualisation of RA treatment to inform interventions improving TTT uptake.
Design: Eligible participants recruited from an online research registry rated 56 items (on 5-point scales) reflecting concepts raised from patient interviews.
Objective: To evaluate the relative prevalence of 8 rheumatic and musculoskeletal diseases (RMDs) across racial and ethnic groups within the National Patient-Centered Clinical Research Network (PCORnet).
Methods: Electronic health records from participating PCORnet institutions and systems from January 1, 2013, to December 31, 2018, were used to identify adult patients with ≥ 2 diagnosis codes for rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), osteoporosis (OP), granulomatosis with polyangiitis (GPA), microscopic polyangiitis (MPA), eosinophilic granulomatosis with polyangiitis (EGPA), giant cell arteritis (GCA), and Takayasu arteritis (TAK). Among those with race and ethnicity data available, we compared prevalence of RMDs by race and ethnicity.
Objective: To examine how patients with rheumatoid arthritis (RA) perceive RA-related laboratory testing and the potential utility of a blood test to predict treatment response to a new RA medication.
Methods: ArthritisPower members with RA were invited to participate in a cross-sectional survey on reasons for laboratory testing plus a choice-based conjoint analysis exercise to determine how patients value different attributes of a biomarker-based test to predict treatment response.
Results: Most patients perceived that their doctors ordered laboratory tests to check for active inflammation (85.
Assessment of Real-World Patient-Reported Outcomes in Patients Initiating Biologic Agents for the Treatment of Autoimmune Diseases: An Observational Study in Four Patient-Powered Research Networks.
Patient Relat Outcome Meas
June 2023
Background: The most reliable and meaningful approach for inclusion of patient-reported outcomes (PROs) in the evaluation of real-world clinical effectiveness of biologics in the treatment of autoimmune diseases is u ncertain. This study aimed to assess and compare the proportions of patients who had abnormalities in PROs measuring important general health domains at the initiation of treatment with biologics, as well as the effects of baseline abnormalities on subsequent improvement.
Methods: PROs were collected for patient participants with inflammatory arthritis, inflammatory bowel disease, and vasculitis using Patient-Reported Outcomes Measurement Information System instruments.
Objective: Patients with autoimmune rheumatic diseases (ARDs) are at greater risk of COVID-19 infection and hospitalization, increasing the stress and uncertainty already associated with unpredictable conditions. These may be heightened for patients with ARDs from underrepresented minority backgrounds. This study aimed to explore patient experiences and ARD-related challenges during the first year of the pandemic.
View Article and Find Full Text PDFObjective: The study objective was to prioritize topics for future patient-centered research to increase uptake of common vaccines, such as for pneumococcal pneumonia, influenza, herpes zoster, human papillomavirus, and severe acute respiratory syndrome coronavirus 2, among adults living with autoimmune conditions.
Methods: A steering committee (SC) was formed that included clinicians, patients, patient advocates, and researchers associated with rheumatic diseases (psoriatic arthritis, rheumatoid arthritis, vasculitis), inflammatory bowel disease, and multiple sclerosis. Through a scoping review and discussions, SC members identified research topics regarding vaccine uptake and/or hesitancy for prioritization.
Background: Mindfulness can improve overall well-being by training individuals to focus on the present moment without judging their thoughts. However, it is unknown how much mindfulness practice and training are necessary to improve well-being.
Objective: The primary aim of this study was to determine whether a standard 8-session web-based mindfulness-based cognitive therapy (MBCT) program, compared with a brief 3-session mindfulness intervention, improved overall participant well-being.
Background: Living practice guidelines are increasingly being used to ensure that recommendations are responsive to rapidly emerging evidence.
Objective: To develop a framework that characterizes the processes of development of living practice guidelines in health care.
Design: First, 3 background reviews were conducted: a scoping review of methods papers, a review of handbooks of guideline-producing organizations, and an analytic review of selected living practice guidelines.
Objective: Despite proven benefits, less than half of patients with rheumatoid arthritis (RA) are treated using a treat-to-target (TTT) strategy. Our objective was to identify critical discrepancies between rheumatologist and patient mental models related to the treatment of RA to inform interventions designed to increase implementation of TTT.
Methods: We developed rheumatologist and patient mental models using the Mental Models Approach to Risk Communication.
Background: Cardiovascular disease (CVD) is the most common cause of death among people with rheumatoid arthritis (RA), with an estimated increased risk of 50-60% compared to the general population. Lipid-lowering strategies have been shown to lower CVD risk significantly in people with RA and hyperlipidemia. Thus, CVD risk assessment has an important role to play in reducing CVD among people with RA.
View Article and Find Full Text PDFObjective: To assess the perceptions and preferences of telemedicine among patients with autoimmune rheumatic diseases during the COVID-19 pandemic.
Methods: We conducted an online survey among patients with autoimmune rheumatic diseases. Attitudes about telemedicine (i.
Objective: We aimed to assess trends in anxiety and interruptions in disease-modifying antirheumatic drug (DMARD) use among patients with rheumatic diseases during the COVID-19 pandemic and to evaluate whether DMARD interruptions were associated with disease flares.
Methods: ArthritisPower, the Vasculitis Patient-Powered Research Network, and other patient organizations invited members to join a 52-week longitudinal study, with baseline surveys completed March 29 to June 30, 2020, with follow-up through May 2021. Logistic regression incorporating generalized estimating equations evaluated associations between interruptions in DMARD use and self-reported disease flares at the next survey, adjusting for demographic characteristics, medications, disease, and calendar time.
Article Synopsis
- - The study aimed to understand the side effects of methotrexate (MTX) in patients with rheumatoid arthritis (RA) or psoriatic arthritis (PsA) using digital data collection and self-controlled case series analytic methods.
- - In phase 1, a survey from the ArthritisPower Registry included 671 adults, revealing that 61% of current MTX users reported side effects, with fatigue being the most common.
- - Phase 2 showed significant increases in nausea and fatigue among those experiencing these symptoms after taking MTX, highlighting the potential of digital monitoring to assess medication tolerability in real time.
Background: The current burden of Crohn's disease (CD) and ulcerative colitis (UC) in minority populations is largely unknown. We sought to evaluate the relative prevalence of CD and UC across racial and ethnic groups within the National Patient-Centered Clinical Research Network (PCORnet).
Methods: We queried electronic health records from 337 centers from January 2013 to December 2018.
Objective: To develop updated guidelines for the pharmacologic management of rheumatoid arthritis.
Methods: We developed clinically relevant population, intervention, comparator, and outcomes (PICO) questions. After conducting a systematic literature review, the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach was used to rate the certainty of evidence.
Objective: To develop updated guidelines for the pharmacologic management of rheumatoid arthritis.
Methods: We developed clinically relevant population, intervention, comparator, and outcomes (PICO) questions. After conducting a systematic literature review, the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach was used to rate the certainty of evidence.
Background: We aimed to compare concerns, social distancing, health care disruptions, and telemedicine use in patients with autoimmune rheumatic disease (ARD) and non-ARD and to evaluate factors associated with immunomodulatory medication interruptions.
Methods: Patients in a multistate community rheumatology practice network completed surveys from April 2020 to May 2020. Adults with common ARD (rheumatoid arthritis, spondyloarthritis, systemic lupus erythematosus) or non-ARD (gout, osteoarthritis, osteoporosis) were evaluated.