A5016513188- Rheumatoid Arthritis Research and Therapies
- Autoimmune and Inflammatory Disorders Research
- Spondyloarthritis Studies and Treatments
- Psoriasis: Treatment and Pathogenesis
- Fibromyalgia and Chronic Fatigue Syndrome Research
- Systemic Lupus Erythematosus Research
- Social Media in Health Education
- Vaccine Coverage and Hesitancy
- Vasculitis and related conditions
- Adolescent and Pediatric Healthcare
- SARS-CoV-2 and COVID-19 Research
- Systemic Sclerosis and Related Diseases
- Telemedicine and Telehealth Implementation
- Otitis Media and Relapsing Polychondritis
- COVID-19 Clinical Research Studies
- Cannabis and Cannabinoid Research
- Bone and Joint Diseases
- HIV, Drug Use, Sexual Risk
- Healthcare Systems and Technology
- Pregnancy and Medication Impact
- Osteoarthritis Treatment and Mechanisms
- Gastrointestinal Bleeding Diagnosis and Treatment
- Adolescent Sexual and Reproductive Health
- Hepatitis C virus research
- Health Systems, Economic Evaluations, Quality of Life
Global Healthy Living Foundation
2018-2024
University of Otago
2024
Cedars-Sinai Medical Center
2024
Texas Christian University
2024
Western Michigan University
2024
Stryker (United States)
2024
University of California, Los Angeles
2024
University of Alabama at Birmingham
2024
RELX Group (United States)
2022
Durham VA Medical Center
2022
To assess concerns and healthcare-related behaviors of patients with autoimmune rheumatic diseases during the coronavirus disease 2019 (COVID-19) pandemic.Adults from United States rheumatoid arthritis (RA), psoriatic (PsA), ankylosing spondylitis (AS), systemic lupus erythematosus (SLE) ArthritisPower Patient-Powered Research Network CreakyJoints patient community completed surveys. Concerns were compared among different conditions, disease-modifying antirheumatic drug (DMARD) use,...
Many rheumatoid arthritis (RA) patients do not achieve their treatment goals and experience symptoms that affect psychosocial outcomes daily activities. This study aimed to identify quantify the unmet needs perceived by US with RA currently taking a disease-modifying antirheumatic drug (DMARD). A cross-sectional, web-based survey was conducted recruited through CreakyJoints, an online patient support community, ArthritisPower®, research registry, from December 2017 January 2018. Participant...
Abstract Background Patient-reported outcomes (PROs) are increasingly used to track symptoms and assess disease activity, quality of life, treatment effectiveness. It is therefore important understand which PROs patients with rheumatic musculoskeletal consider most for management. Methods Adult US within the ArthritisPower registry ankylosing spondylitis, fibromyalgia syndrome, osteoarthritis, osteoporosis, psoriatic arthritis, rheumatoid systemic lupus erythematosus were invited select...
We describe the journey to diagnosis of ankylosing spondylitis (AS) from patient perspective and examine differences in this by sex.US adults aged ≥ 18 years with a self-reported AS were recruited online through CreakyJoints, support community, ArthritisPower, research registry. Respondents completed web-based survey on sociodemographics, disease burden, history. Results stratified sex time using two-sample t tests χ2 tests, respectively, observe across groups; P < 0.05 was considered...
Abstract Background There are limited real-world data on the diagnostic experiences of patients with psoriatic arthritis (PsA), including medical care sought and potential barriers to diagnosis. We aim describe patient related receiving a PsA Methods Ours was mixed-method, 2-phase study. Phase 1 comprised concept elicitation cognitive interviews clinical experts adults diagnosed develop cross sectional, web-based survey. US self-reported diagnosis were recruited through support community...
We aimed to compare concerns, social distancing, health care disruptions, and telemedicine use in patients with autoimmune rheumatic disease (ARD) non-ARD evaluate factors associated immunomodulatory medication interruptions.Patients a multistate community rheumatology practice network completed surveys from April 2020 May 2020. Adults common ARD (rheumatoid arthritis, spondyloarthritis, systemic lupus erythematosus) or (gout, osteoarthritis, osteoporosis) were evaluated. Concerns about...
Digital health studies using electronic patient reported outcomes (ePROs), wearables, and clinical data to provide a more comprehensive picture of health. Newly initiated patients on upadacitinib or adalimumab for RA will be recruited from community settings in the Excellence NEtwork RheumatoloGY (ENRGY) practice-based research network. Over period three six months, streams collected (1) linkable physician-derived data; (2) self-reported daily weekly ePROs through ArthritisPower registry...
We sought to identify (1) what types of information US adults with rheumatic and musculoskeletal diseases (RMD) perceive as most important know about their disease, (2) functions they would use in an RMD-specific smartphone app.
The goal of this study was to ascertain COVID-19 vaccine uptake, reasons for hesitancy, and self-reported flare in a large rheumatology practice-based network.
Objective We aimed to assess trends in anxiety and interruptions disease‐modifying antirheumatic drug (DMARD) use among patients with rheumatic diseases during the COVID‐19 pandemic evaluate whether DMARD were associated disease flares. Methods ArthritisPower, Vasculitis Patient‐Powered Research Network, other patient organizations invited members join a 52‐week longitudinal study, baseline surveys completed March 29 June 30, 2020, follow‐up through May 2021. Logistic regression...
To assess the perceptions and preferences of telemedicine among patients with autoimmune rheumatic diseases during COVID-19 pandemic.We conducted an online survey diseases. Attitudes about (i.e., acceptability), evaluated using validated Telemedicine Perception Questionnaire (TMPQ), visit satisfaction were assessed for different experiences types disease.Of 3,369 invitations, 819 responses received. Participants had a mean ± SD age 58.6 11.6 years mostly White (n = 759, or 92.7%) female 702,...
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 characterize engagement, protocol adherence, data completeness among with rheumatoid arthritis enrolled in Tracking of Arthritis Longitudinally (DIGITAL) study. Methods Participants were invited participate this app-based study, which included a 14-day run-in an 84-day main In...
The magnitude and frequency of temporally related methotrexate (MTX)-associated side effects in rheumatoid arthritis (RA) or psoriatic (PsA) patients are difficult to quantify using traditional research methods. As proof concept designed part implement digital data collection for remote patient monitoring, we conducted a study implementing self-controlled case series analytic methods understand MTX-related symptoms RA PsA. In phase 1, adults with PsA from the ArthritisPower® Registry (past...
Rheumatoid arthritis (RA) is a condition with symptoms that vary over time. The typical 3- to 6-month interval between physician visits may lead patients failing recall or underreporting experienced during the interim. Wearable digital technology enables regular passive collection of patients' biometric and activity data. If it shown be strongly related data captured by patient-reported outcome (PRO) measures, information collected passively from wearable could serve as an objective proxy...
Abstract Background Few studies have investigated patients’ own treatment goals in rheumatoid arthritis (RA). The objective of this real-world, cross-sectional study US patients with RA was to identify factors that believed influenced their physician’s decisions. Secondary objectives included reasons tolerated sub-optimal disease control and perceived barriers optimization. Methods Eligible participants were enrolled the ArthritisPower registry, ≥ 19 years, had physician-diagnosed RA,...
Objective This study aimed to analyze the concerns and health-related behaviors in patients with vasculitis during early phase of coronavirus disease 2019 (COVID-19) pandemic North America. Methods Patients America were invited complete an online survey through Vasculitis Patient-Powered Research Network collaboration Foundation Relapsing Polychondritis Foundation. Questions focused on related doctors' visits, tests, medication, telehealth use. Factors affecting their concern determined....
Despite recent advances in treatment for psoriatic arthritis (PsA), many patients experience inadequate response or intolerance to therapy, indicating that unmet treatment-related needs remain. To further characterize these needs, we evaluated patients' experiences regarding the burden of PsA symptoms and disease impacts, preferences treatment. Patients from ArthritisPower, a rheumatology research registry, completed web-based survey. Object case best-worst scaling (BWS) was used evaluate...
Objective We performed a scoping review of the relevant literature on home‐based telehealth in rheumatology to understand its appropriate application practice. Methods searched Cochrane Library, PubMed, Web Science, and scientific meeting abstracts identify articles that specifically addressed suitability, barriers telehealth, patient‐reported outcomes (PROs) collected settings, satisfaction. From initial search 4,882 studies, 23 reports were included. In addition, 10 also eligible for...
The aim of this study was to characterize employment, work productivity, and biologic disease-modifying anti-rheumatic drug (bDMARD) treatment in a predominantly female population axial spondyloarthritis (axSpA) patients real-world setting. This cross-sectional axSpA participants within the ArthritisPower registry. Outcomes were assessed with surveys (Work Productivity Activity Impairment [WPAI], Bath Ankylosing Spondylitis Disease Index [BASDAI], Patient-Reported Measurement Information...
Cardiovascular disease (CVD) is the most common cause of death among people with rheumatoid arthritis (RA), an estimated increased risk 50-60% compared to general population. Lipid-lowering strategies have been shown lower CVD significantly in RA and hyperlipidemia. Thus, assessment has important role play reducing RA. Yet currently only 37 45% this population are receiving primary lipids screening. This paper describes CArdiovascular Risk assEssment for (CARE RA) intervention, which...
<h3>Background</h3> A US-based study demonstrated that patients with ankylosing spondylitis (AS) experience a significant delay (on average 14 years) from symptom onset to diagnosis of AS.<sup>1</sup><b> U</b>nderstanding the journey AS and identifying opportunities reduce misdiagnosis incorrect referral are crucial reducing time diagnosis, preventing irreversible joint damage<b>,</b> preserving mobility. <h3>Objectives</h3> To describe patient perspective differences observed between...