Which education topics and smartphone app functions are prioritized by U.S. rheumatology patients? A mixed-methods study.

OBJECTIVE: We sought to identify (a) what types of information US adults with rheumatic and musculoskeletal diseases (RMD) perceive as most important to know about their disease, and (b) what functions they would use in an RMD-specific smartphone app. METHODS: Nominal groups with RMD patients were conducted via online tools to generate a list of needed education 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. Chi-square tests and multivariate regression models were used to determine differences in priorities between groups of respondents with inflammatory conditions (IC) and osteoarthritis (OA), and possible associations. RESULTS: At least 80% of respondents considered finding a rheumatologist, understanding tests and medications, and quickly recognizing and communicating symptoms to doctors as extremely important education topics. The highest-ranked topic for both IC and OA groups was "knowing when the medication is not working." The app functions that most respondents considered useful were to: view lab results, record symptoms to share with their rheumatology provider, and record symptoms (e.g. pain, fatigue) or disease flares for health tracking over time. Approximately one-third of respondents owned and regularly used a wearable activity tracker. CONCLUSION: People with RMD prioritized information about labs, medications, and disease/symptom monitoring, which can be used to create educational and digital tools that support patients during their disease journey.

Wearable activity tracker study exploring rheumatoid arthritis patients' disease activity using patient-reported outcome measures, clinical measures, and biometric sensor data (the wear study).

Background: Digital health studies using electronic patient reported outcomes (ePROs), wearables, and clinical data to provide a more comprehensive picture of patient health. Methods: Newly initiated patients on upadacitinib or adalimumab for RA will be recruited from community settings in the Excellence NEtwork in RheumatoloGY (ENRGY) practice-based research network. Over the period of three to six months, three streams of data will be collected (1) linkable physician-derived data; (2) self-reported daily and weekly ePROs through the ArthritisPower registry app; and (3) biometric sensor data passively collected via wearable. These data will be analyzed to evaluate correlations among the three types of data and patient improvement on the newly initiated medication. Conclusions: Results from this study will provide valuable information regarding the relationships between physician data, wearable data, and ePROs in patients newly initiating an RA treatment, and demonstrate the feasibility of digital data capture for Remote Patient Monitoring of patients with rheumatic disease.

Home-Based Telemedicine in Rheumatology-A Scoping Review.

OBJECTIVE: We performed a scoping review of the relevant literature on home-based telehealth in rheumatology to understand its appropriate application in rheumatology practice. METHODS: We searched the Cochrane Library, PubMed, Web of Science, and scientific meeting abstracts to identify articles that specifically addressed telehealth suitability, barriers to telehealth, patient-reported outcomes (PROs) collected in telehealth settings, and telehealth satisfaction. From the initial search of 4,882 studies, 23 reports were included. In addition, 10 abstracts were also eligible for analysis, resulting in a total of 33 articles: 2 randomized clinical trials, 9 prospective cohort studies, and 22 retrospective studies. RESULTS: We found that triage appointments or predictive models could be helpful in selecting patients for telehealth and that telehealth interventions were appropriate for follow-up of patients with systemic lupus erythematosus and inflammatory arthritis, but that conducting new patient visits over telehealth was not ideal. Barriers to telehealth include patient factors (age, technology access) and need for physician/process factors (eg, physical examinations). PROs collected in regular practice can be incorporated into telehealth. Several small, single-center studies suggest that telehealth does not lead to negative outcomes compared with in-person visits, and overall, patients report high patient satisfaction with telehealth. In several scenarios, home-based telehealth was equivalent to in-person visits with regard to patient outcomes and satisfaction. CONCLUSION: The widespread potential of telehealth to manage and deliver care for people with rheumatic disease is significant. As such, further research in the form of randomized controlled trials can help contribute to growing evidence that shapes telehealth implementation for patients with rheumatic diseases.

COVID-19 Vaccine Uptake, Hesitancy, and Flare in a Large Rheumatology Practice Network.

OBJECTIVE: 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. METHODS: A tablet-based survey was deployed by 108 rheumatology practices from December 2021 to December 2022. Patients were asked about COVID-19 vaccine status and why they might not receive a vaccine or booster. We used descriptive statistics to explore the differences between vaccination status and vaccine and booster hesitancy, comparing patients with and without autoimmune and inflammatory rheumatic diseases (AIIRDs). We used multivariable logistic regression to examine the association between vaccine uptake and AIIRD status and self-reported flare and AIIRD status. We reported adjusted odds ratios (aORs). RESULTS: Of the 61,158 patients, 89% reported at least one dose of vaccine; of the vaccinated, 68% reported at least one booster. Vaccinated patients were less likely to have AIIRDs (44% vs 56%). A greater proportion of patients with AIIRDs were vaccine hesitant (14% vs 10%) and booster hesitant (21% vs 16%) compared to patients without AIIRDs. Safety concerns (28%) and side effects (23%) were the main reasons for vaccine hesitancy, whereas a lack of recommendation from the physician was the primary factor for booster hesitancy (23%). Patients with AIIRD did not have increased odds of self-reported flare or worsening disease compared to patients without with AIIRD (aOR 0.99, 95% confidence interval [CI] 0.94-1.05). Among the patients who were vaccine hesitant and booster hesitant, 12% and 39% later reported receiving a respective dose. Patients with AIIRD were 32% less likely to receive a vaccine (aOR 0.68, 95% CI 0.65-0.72) versus patients without AIIRD. CONCLUSION: Some patients who are vaccine and booster hesitant eventually receive a vaccine dose, and future interventions tailored to patients with AIIRD may be fruitful.

Participant Engagement and Adherence to Providing Smartwatch and Patient-Reported Outcome Data: Digital Tracking of Rheumatoid Arthritis Longitudinally (DIGITAL) Real-World 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. In the run-in period, data were collected via the ArthritisPower mobile app to increase app familiarity and identify the individuals who were motivated to participate. Successful completers of the run-in period were mailed a wearable smartwatch, and automated and manual prompts were sent to participants, reminding them to complete app input or regularly wear and synchronize devices, respectively, during the main study. Study coordinators monitored participant data and contacted participants via email, SMS text messaging, and phone to resolve adherence issues per a priori rules, in which consecutive spans of missing data triggered participant contact. Adherence to data collection during the main study period was defined as providing requested data for >70% of 84 days (daily ePRO, ≥80% daily smartwatch data) or at least 9 of 12 weeks (weekly ePRO). RESULTS: Of the 470 participants expressing initial interest, 278 (59.1%) completed the run-in period and qualified for the main study. Over the 12-week main study period, 87.4% (243/278) of participants met the definition of adherence to protocol-specified data collection for weekly ePRO, and 57.2% (159/278) did so for daily ePRO. For smartwatch data, 81.7% (227/278) of the participants adhered to the protocol-specified data collection. In total, 52.9% (147/278) of the participants met composite adherence. CONCLUSIONS: Compared with other digital health rheumatoid arthritis studies, a short run-in period appears useful for identifying participants likely to engage in a study that collects data via a mobile app and wearables and gives participants time to acclimate to study requirements. Automated or manual prompts (ie, "It's time to sync your smartwatch") may be necessary to optimize adherence. Adherence varies by data collection type (eg, ePRO vs smartwatch data). INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/14665.

Understanding Heterogeneity in Patients' Conceptualisation of Treatment for Rheumatoid Arthritis: A Cluster Analysis.

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. Using items describing adhering to physician recommendations to create a binary criterion variable for medication adherence, we conducted a principal components analysis on the remaining items using Varimax rotation, describing how these factors predict adherence over and above demographic characteristics. We further use optimal sets in regression to identify the individual concepts that are most predictive of medication adherence. RESULTS: We found significant heterogeneity in patients' conceptualisation of RA treatment among 621 persons with RA. A scree plot revealed a four-factor solution explained 38.4% of the variance. The four factors expected to facilitate TTT uptake were (% variance explained): (1) Access to high quality care and support (11.3%); (2) low decisional conflict related to changing disease-modifying antirheumatic drugs (DMARDs) (10.1%); (3) endorsement of a favourable DMARD risk/benefit ratio (9.9%); and (4) confidence that testing reflects disease activity (7.2%). These factors account for 13.8% of the variance in full medication adherence, fully explaining the only significant demographic predictor, age of the patient. The individual items most predictive of poor adherence centre on the lack of effective patient-physician communication, specifically insufficient access to information from rheumatologists, along with the need to seek information elsewhere. CONCLUSION: Patients' conceptualisation of RA treatment varies; however, almost all patients have difficulty escalating DMARDs, even with access to quality information and an understanding of the benefits of TTT. Tailored interventions are needed to address patient hesitancy to escalate DMARDs.

Patient Perceptions of Rheumatoid Arthritis Blood Work: A Cross-Sectional Survey in the ArthritisPower Registry.

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 (85.9%) or assess medication side effects (81.2%). The most commonly ordered blood tests used to monitor RA were complete blood counts, liver function tests, and those measuring C-reactive protein (CRP) and erythrocyte sedimentation rate. Patients felt CRP was most helpful in understanding their disease activity. Most worried their current RA medication would eventually stop working (91.4%) and they would waste time trying a new RA medication that may not work for them (81.7%). For patients who would require a future change in RA treatment, a majority (89.2%) reported that they would be very/extremely interested in a blood test that could help predict whether such new medication would be effective. Highly accurate test results (improving the chance RA medication will work from 50% to 85-95%) were more important to patients than low out-of-pocket cost (<$20) or minimal wait time (<7 days). CONCLUSIONS: Patients consider RA-related blood work important for monitoring of inflammation and medication side effects. They worry about treatment effectiveness and would undergo testing to accurately predict treatment response.

Balancing COVID-19 Risk With Physical and Mental Wellness: Perspectives of Patients With Autoimmune Rheumatic Diseases Throughout the Pandemic.

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. METHODS: Between December 2020 and May 2021, 60-minute semistructured interviews were conducted with English- and Spanish-speaking adults, aged 18 years or older with self-reported diagnosis of ARD, via phone or videoconferencing using an interview guide on living with an ARD during the pandemic. Analysis combined methods of phenomenology and content analysis through three steps: 1) summarizing interviews, 2) iteratively refining units of meaning, and 3) axial and selective coding to determine cross-cutting themes. Study procedures were conducted by a multidisciplinary team, a majority also diagnosed with ARDs. RESULTS: The research team interviewed 22 patients (39.8 ± 15.7 years old; 82.8% female; 31.8% Hispanic or Latino/a/x) with ARDs. Themes included 1) information access and understanding, 2) problem solving access to health care, 3) balancing risks, and 4) mental health implications. Within these themes, patients from underrepresented minority backgrounds faced unique challenges. CONCLUSION: Patients with ARDs require direct and timely communication about their risk of COVID-19 morbidity and mortality and require increased support for psychosocial and ARD-related implications of the pandemic. Health care systems must consider ways to support patients who are balancing chronic disease management with risk reduction for contracting emerging COVID-19 variants.

Engaging Multistakeholder Perspectives to Identify Patient-Centered Research Priorities Regarding Vaccine Uptake Among Adults With Autoimmune Conditions.

OBJECTIVE: 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. A larger multistakeholder alliance that included patients and patient advocates, clinicians, researchers, policy makers, regulators, and vaccine manufacturers conducted a modified Delphi exercise online with three rating rounds and one ranking round. Frequency analysis and comparisons across stakeholder groups were conducted. A weighted ranking score was generated for each item in the ranking round for final prioritization. RESULTS: Through the Delphi process, 33 research topics were identified, of which 13 topics were rated as critical by more than 70% of all stakeholders (n = 31). The two highest ranked critical topics per the full stakeholder group were "How well a vaccine works for adults with autoimmune conditions" and "How beliefs about vaccine safety affect vaccine uptake." CONCLUSION: A multistakeholder group identified key topics as critically important priorities for future research to decrease vaccine hesitancy and improve uptake of vaccines for adults with autoimmune conditions.

Accessibility of adult immunizations in pharmacies compared to physician offices in low-income communities.

BACKGROUND: Expanding access to immunization services is essential for improving low-income communities' access to health care. OBJECTIVE: The purpose of this analysis was to assess whether adults who live in low-income communities, and adults 65 years old and older who live in low-income communities, have greater access to pharmacies for immunization services than to relevant physician offices. METHODS: Databases of the number of physician practices and pharmacy locations were geocoded into ZIP Code tabulation areas (ZCTAs). The ZCTAs where the share of families living at or below the federal poverty threshold exceeded 30% were defined as low-income communities for purposes of the analysis. The raw access comparisons were adjusted to reflect whether physician practices have Medicare Part D billing capability, an access constraint for patients aged 65 years and over, and to reflect the differences in hours of operation. RESULTS: There were 15.1% more pharmacy locations within the low-income communities than the availability of physician practices. After adjusting for the hours of operation, the pharmacy locations offered 95.7% more operating hours than the physician practice sites. Compared to the physician practices that have Medicare Part D billing capability, there were 203.0% more pharmacy locations. CONCLUSION: Based on the results, lower-income families had greater access to pharmacies than to physician practices, which indicates that pharmacies can play a valuable role in expanding immunization access and could warrant considering policy reforms that enhance the authority of pharmacists to administer vaccinations. State-level potential reforms could include expanding and harmonizing laws governing pharmacist authority to deliver such services, creating health enterprise zones, and granting special tax breaks, regulatory exemptions, or public assistance to encourage the establishment of physician offices and pharmacies in low-income communities.

Protocol for the pilot randomized trial of the CArdiovascular Risk assEssment for Rheumatoid Arthritis (CARE RA) intervention: a peer coach behavioral intervention.

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. Yet currently only 37 to 45% of this population are receiving primary lipids screening. This paper describes the CArdiovascular Risk assEssment for RA (CARE RA) intervention, which is designed to address this issue. CARE RA is a peer coach intervention, that is, an intervention in which a person with RA coaches another person with RA, which is designed to educate people with RA about the relation between RA and CVD risk and to help them obtain evidence-based CVD risk assessment and treatment. METHODS: This is an open-label pilot study that will test if the participants assigned to complete the CARE RA curriculum with a peer coach will receive a cardiovascular risk assessment more frequently compared to those that complete the CARE RA curriculum by themselves. The CARE RA intervention is guided by Social Cognitive Theory. Participants in the peer coach intervention arm will receive the assistance of a peer coach who will call the participants once a week for 5 weeks to go over the CARE RA curriculum and train them on how to obtain CVD risk assessment. The control arm will complete the CARE RA curriculum without any assistance. Participants will be randomized 1:1 either to the control arm or to the peer coach intervention arm. The primary outcome is a participant's having a CVD risk assessment or initiating a statin, if indicated. Secondary outcomes include patient activation and RA medication adherence. The RE-AIM implementation framework guides the implementation and evaluation of the intervention. DISCUSSION: This pilot study will test the feasibility of the peer coach intervention in anticipation of a larger trial. CARE RA pioneers the use of peer coaches to facilitate the implementation of evidence-based treatment guidelines among people with RA. TRIAL REGISTRATION: ClinicalTrials.gov NCT04488497 . Registered on July 28, 2020.

Cannabis for Rheumatic Disease Pain: a Review of Current Literature.

PURPOSE OF REVIEW: Changing attitudes about marijuana have led to an increase in use of medicinal marijuana, especially for painful chronic conditions. Patients ask rheumatologists for guidance on this topic. This review provides up-to-date information on the safety and efficacy of medicinal cannabis for rheumatic disease pain. RECENT FINDINGS: The number of publications related to rheumatic disease and cannabis has increased, but recent literature skews heavily toward reviews vs primary research. Data supporting a role for cannabinoids in rheumatic disease continue to grow. Observational and survey studies show increased use of medicinal cannabis, both by people with rheumatic disease and the general population, and suggest that patients find these treatments beneficial. Prospective studies, however, including randomized controlled clinical trials, are rare and sorely needed. As medicinal cannabis use for rheumatic diseases rises, despite lack of evidence, we review the sparse data available and provide tips for conversations about medicinal cannabis for rheumatologists.

Experiences and Treatment Preferences in Patients With Psoriatic Arthritis: A Cross-Sectional Study in the ArthritisPower Registry.

INTRODUCTION: 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 unmet needs, we evaluated patients' experiences regarding the burden of PsA symptoms and disease impacts, and patients' preferences for treatment. METHODS: Patients from ArthritisPower, a rheumatology research registry, completed a web-based survey. Object case best-worst scaling (BWS) was used to evaluate the relative burden of 11 PsA-related symptoms and the relative importance of improvement in nine PsA-related disease impacts. BWS data were analyzed using a random-parameters logit model. Patient demographics, preferences for mode and frequency of therapy, and preferences for methotrexate were analyzed descriptively. RESULTS: Among the 332 participants, most were White (94%), female (80%), with mean age of 54 years (SD 11.4). In the BWS, joint pain was the most bothersome symptom, followed by other musculoskeletal pain and fatigue. The BWS for disease impacts found that improvements in the ability to perform physical activities were most important, followed by improvements in the ability to function independently, sleep quality, and the ability to perform daily activities. The most burdensome symptoms and desired disease impact improvements were similar in patients regardless of their experience with biologic disease-modifying antirheumatic drugs. The most preferred mode and frequency of treatment administration was oral, once-daily medication (preferred by 38% of respondents), and 74% prioritized therapies that significantly improved joint-related symptoms versus psoriasis-related symptoms. The majority of respondents (65%) preferred PsA treatment regimens that did not include methotrexate. CONCLUSIONS: Patients with PsA from a rheumatology registry found musculoskeletal pain symptoms to be the most bothersome and prioritized improvements to functional impacts of their disease. These findings can better inform development of new therapies and guide shared patient-provider treatment decision-making.

Employment, Work Productivity, and Biologic Treatments in Self-Reported Axial Spondyloarthritis: a Cross-Sectional Study in a Female Predominant Population from the ArthritisPower Registry.

INTRODUCTION: 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 of axial spondyloarthritis (axSpA) patients in a real-world setting. METHODS: This was a cross-sectional study of axSpA participants within the ArthritisPower registry. Outcomes were assessed with surveys (Work Productivity and Activity Impairment [WPAI], Bath Ankylosing Spondylitis Disease Activity Index [BASDAI], and Patient-Reported Outcomes Measurement Information System instruments) and compared between subgroups (employed vs. not employed; taking vs. not taking a bDMARD). RESULTS: Among the 195 participants, 117 (60.0%) were employed and 78 (40.0%) were not employed entirely or partially due to axSpA. The mean age of the participants was 47.6 years and 86.7% were female. Current bDMARD use was reported by 57.4% of those surveyed (59.8% employed vs. 53.9% not employed; p = 0.408). Compared to not employed participants, employed participants had more favorable disease activity (BASDAI 6.0 vs. 7.6; p < 0.001) and overall health (self-rated health 2.5 vs. 1.8; p < 0.001). Employed participants, compared to not employed participants, were diagnosed at an earlier age (36.0 vs. 42.5 years, respectively) and experienced a shorter time between symptom onset and diagnosis (9.5 vs. 13.6 years, respectively). Employed participants reported missing on average 6.5 days of work and experienced a 52.7% impairment on work productivity due to axSpA over a 3-month period. Absenteeism and presenteeism were statistically similar between participants taking a bDMARD versus those not taking a bDMARD. CONCLUSIONS: Although bDMARD treatment rates were similar between employed and not employed participants, disease activity and overall health were better in employed than non-employed participants. Employed participants experienced substantial work productivity impairment due to axSpA.

Patient Perceptions and Preferences Regarding Telemedicine for Autoimmune Rheumatic Diseases Care During the COVID-19 Pandemic.

OBJECTIVE: 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.e., telemedicine acceptability), evaluated using the validated Telemedicine Perception Questionnaire (TMPQ), and visit satisfaction were assessed for different telemedicine experiences and types of autoimmune rheumatic disease. RESULTS: Of 3,369 invitations, 819 responses were received. Participants had a mean ± SD age of 58.6 ± 11.6 years and were mostly White (n = 759, or 92.7%) and female (n = 702, or 85.7%). Of the 618 participants who said that telemedicine was available to them, 449 (72.7%) reported having a telemedicine visit, with 303 (67.5%) reporting attending a telemedicine video visit. On a 0 to 10 scale, the mean ± SD visit satisfaction score was 7.3 ± 1.8, with 25.8% of respondents being very satisfied (scores of 9 or 10). Video visits and higher TMPQ scores were associated with higher satisfaction. Compared to those who did not experience a telemedicine visit, patients who did were more likely to prefer telemedicine (video or phone) for routine visits (73.7% versus 44.3%; P < 0.001), reviewing test results (64.8% versus 53.8%; P < 0.001), when considering changing medications (40.5% versus 26.8%; P < 0.001), and when starting a new injectable medication (18.9% versus 12.7%; P = 0.02). CONCLUSION: During the COVID-19 pandemic, patients with autoimmune rheumatic diseases frequently had telemedicine visits, with the majority held via video, and were satisfied with these visits. These results suggest that because patients prefer telemedicine for certain visit reasons, maximizing effective use of telemedicine will require personalized patient scheduling.

Treatment Satisfaction and Decision-making from the Patient Perspective in Axial Spondyloarthritis: Real-World Data from a Descriptive Cross-sectional Survey Study from the ArthritisPower Registry.

OBJECTIVE: Aims were to 1) to characterize patient decision-making with treatment for axial spondyloarthritis (axSpA) and 2) to explore relationships among decision-making, treatment satisfaction, and biologic disease modifying antirheumatic drugs (bDMARDs). METHODS: ArthritisPower participants with physician-diagnosed axSpA were invited to complete an online survey about their treatment and their most recent physician visit. Analysis compared treatment decision by satisfaction and bDMARD status. RESULTS: Among the 274 participants, 87.2% were female, and the mean age was 50 years. Of participants, 79.5% had researched treatment before their most recent physician visit, and 56.9% discussed treatment change at their most recent physician visit. Of treatment-change discussions, 69.2% of them were related to escalation, compared with deescalation (27.6%) and/or switching (39.1%). Among those participants who discussed a change, 73.7% agreed to it because they felt that their disease was not being controlled (54.9%) or felt that it could be better controlled on new treatment (20.3%). Top symptoms prompting change were back/buttock pain (63.3%), other joint pain (55.1%), and fatigue (54.1%). Among bDMARD-treated participants (n = 128), important factors for treatment decisions were prevention of long-term axSpA consequences (92.9%) and doctor's advice (87.5%). Among 43.4% of participants reporting treatment dissatisfaction, 37% did not discuss treatment change. Current bDMARD use was more common in satisfied (61.9%) than dissatisfied participants (26.9%). CONCLUSION: In this cross-sectional study of a predominantly female axSpA population, patients frequently researched treatment options and discussed escalation with their providers. Under two-thirds of participants who were dissatisfied with treatment discussed changes at their most recent visit. Current bDMARD use was associated with higher satisfaction, and bDMARD users considered prevention of long-term consequences and doctor's advice to be very important for decision-making.

Patient-Reported Nausea and Fatigue Related to Methotrexate: A Prospective, Self-Controlled Study in the ArthritisPower® Registry.

INTRODUCTION: The magnitude and frequency of temporally related methotrexate (MTX)-associated side effects in rheumatoid arthritis (RA) or psoriatic arthritis (PsA) patients are difficult to quantify using traditional research methods. As proof of concept designed in part to implement digital data collection for remote patient monitoring, we conducted a study implementing self-controlled case series analytic methods to understand MTX-related symptoms in RA or PsA. METHODS: In study phase 1, adults with RA or PsA from the ArthritisPower® Registry (past or current oral MTX users) participated in a cross-sectional survey. In phase 2, current MTX users participated in a longitudinal study and completed the Patient-Reported Outcomes Measurement Information System (PROMIS®) 1-day nausea/vomiting and fatigue measure. Within-person change in PROMIS scores between risk (6-36 h post-dose) and control (96-144 h post-dose) windows were compared using mixed models. RESULTS: The baseline survey was completed by 671 participants (mean age: 54 years, 88% female, 92% white, 79% with RA). Among current MTX users (353/671 [53%]), most reported MTX-associated side effects (216/353 [61%]), most frequently fatigue (161/353 [46%]). Among phase 2 participants with (n = 39) and without (n = 84) baseline nausea, mean increase in PROMIS nausea was 5.1 units (P < 0.0001) and 0.7 units (P = 0.135), respectively; among those with (n = 51) and without (n = 72) baseline fatigue, mean increase in PROMIS fatigue was 3.9 units (P = 0.0003) and 0.4 units (P = 0.554), respectively. CONCLUSIONS: Digital remote patient monitoring presents an opportunity to detect and address medication tolerability in real time. Using a novel study design to control for between-person confounding, the magnitude of nausea and fatigue experienced by participants with RA and PsA temporally related to weekly MTX use was substantial.

Medication Interruptions and Subsequent Disease Flares During the COVID-19 Pandemic: A Longitudinal Online Study of Patients With Rheumatic Disease.

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. RESULTS: Among 2,424 patients completing a median of 5 follow-up surveys, the mean age was 57 years, 87% were female, and the most common conditions were rheumatoid arthritis, vasculitis, and psoriatic arthritis. Average Patient-Reported Outcomes Measurement Information System (PROMIS) anxiety T scores decreased from April 2020 (58.7) to May 2021 (53.7) (P < 0.001 for trend). Interruptions in DMARD use decreased from April (11.2%) to December 2020 (7.5%) (P < 0.001) but increased through May 2021 (14.0%) (P < 0.001). Interruptions in DMARD use were associated with a significant increase in severe flares (rated ≥6 of 10) at the next survey (12.9% versus 8.0% [odds ratio (OR) 1.71 (95% confidence interval [95% CI 1.23, 2.36]) although not any flare (OR 1.18 [95% CI 0.89, 1.58])]. CONCLUSION: Anxiety and interruptions in DMARD use initially decreased over time, but DMARD interruptions increased during 2021, possibly related to an increase in COVID-19 cases or vaccine availability. Interruptions in DMARD use were associated with increased rates of severe disease flares, highlighting the importance of avoiding unnecessary DMARD interruptions.

Patient Perspectives on Biologics for Axial Spondyloarthritis in a Cross-sectional Study in a Predominantly Female Population: Treatment Satisfaction, Wear-off Between Doses, and Use of Supplemental Medication.

INTRODUCTION: There is limited information regarding treatment experience of patients with axial spondyloarthritis/ankylosing spondylitis (axSpA/AS) receiving biological disease-modifying antirheumatic drugs (bDMARDs). Here we characterize patient experiences and perspectives, including satisfaction among those currently treated with bDMARD therapy for axSpA/AS. We also assess the use of supplemental medication during perceived wear-off between doses. METHODS: Adult participants from the United States within the ArthritisPower registry with physician-diagnosed axSpA/AS were invited to complete electronic patient-reported outcome measures and an online survey about their perspectives of treatment. Analysis compared patient characteristics and treatment satisfaction by whether wear-off in axSpA/AS between bDMARD doses was reported. RESULTS: Of 128 patients currently taking a DMARD, the mean age was 46.9 (10.3) years, 82.0% were female, and 93.8% were White. A total of 78 (60.9%) perceived wear-off with their current bDMARD before the next dose, 19 (14.8%) did not experience wear-off and 31 (24.2%) were unsure about wear-off. Mean (standard deviation [SD]) Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) score indicated poor disease control in all patients receiving bDMARDs (6.4 [1.8]); worse for those perceiving wear-off between doses versus those who did not perceive wear-off or were unsure (6.8 [1.6] vs. 5.9 [2.0], p = 0.011). Patients experiencing wear-off reported being 'very satisfied' or 'somewhat satisfied' with their treatment less frequently than patients without wear-off (73.1 vs. 89.5%, respectively). Of patients reporting wear-off, 82.1% (n = 64) used supplemental medications during wear-off (non-steroidal anti-inflammatory drugs [68.8%, n = 44], muscle relaxants [42.2%, n = 27], and/or opioids [37.5%, n = 24]). CONCLUSIONS: In a predominantly female sample of bDMARD-treated patients with axSpA/AS and high disease activity, the majority expressed treatment satisfaction. However, most experienced wear-off between doses and relied on supplemental medications, including opioids, to manage symptoms.