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.

Vitamin B12 status and hyperhomocysteinemia in patients with Rheumatoid arthritis treated with methotrexate and folic acid.

BACKGROUND: Rheumatoid arthritis (RA) is an inflammatory arthritis in which the immune system targets synovial joints. Methotrexate serves as the mainstay of treatment for RA due to its efficacy. However, patients treated with methotrexate are uniquely at risk for vitamin B12 deficiency and hyperhomocysteinemia due to coincident disease risk factors and the fact that methotrexate use is associated with malabsorption. The objective of this study was to assess for vitamin B12 deficiency among patients with RA treated with methotrexate and folic acid. METHODS: This cross-sectional study included 50 patients with RA treated with methotrexate and folic acid and 49 patients with RA treated with other therapies. Patients were matched by age, sex, race, renal function, and disease activity. We compared plasma vitamin B12, methylmalonic acid, and homocysteine levels between these two groups utilizing quantitative and categorical analyses. RESULTS: Thirty-seven (74 %) RA patients on methotrexate and folic acid had elevated plasma homocysteine levels compared with only 27 (55 %) RA patients receiving other therapies (P < 0.05). The proportion of patients with low vitamin B12 and high methylmalonic acid levels did not differ between the two groups. CONCLUSIONS: Our data show high plasma homocysteine levels among RA patients treated with methotrexate and folic acid. While plasma vitamin B12 levels were similar between the two groups, high plasma homocysteine is also a sensitive marker of vitamin B12 deficiency. Additional studies should evaluate for the presence of clinical features of vitamin B12 deficiency and hyperhomocysteinemia among RA patients treated with methotrexate and folic acid.

An Emergency Department-based system intervention to improve osteoporosis screening for older adults at high-risk of fracture.

Falls and osteoporosis are risk factors for fragility fractures. Bone mineral density (BMD) assessment is associated with better preventative osteoporosis care, but it is underutilized by those at high fracture risk. We created a novel electronic medical record (EMR) alert-driven protocol to screen patients in the Emergency Department (ED) for fracture risk and tested its feasibility and effectiveness in generating and completing referrals for outpatient BMD testing after discharge. The EMR alert was configured in 2 tertiary-care EDs and triggered by the term "fall" in the chief complaint, age (≥65 years for women, ≥70 years for men), and high fall risk (Morse score ≥ 45). The alert electronically notified ED study staff of potentially eligible patients. Participants received osteoporosis screening education and had BMD testing ordered. From November 15, 2020 to December 4, 2021, there were 2,608 EMR alerts among 2,509 patients. We identified 558 patients at high-risk of fracture who were screened for BMD testing referral. Participants were excluded for: serious illness (N = 141), no documented health insurance to cover BMD testing (N = 97), prior BMD testing/recent osteoporosis care (N = 58), research assistant unavailable to enroll (N = 53), concomitant fracture (N = 43), bedridden status (N = 38), chief complaint of fall documented in error (N = 38), long-term care residence (N = 34), participation refusal (N = 32), or hospitalization (N = 3). Of the 16 participants who had BMD testing ordered, 7 scheduled and 5 completed BMD testing. EMR alerts can help identify subpopulations who may benefit from osteoporosis screening, but there are significant barriers to identifying eligible and willing patients for screening in the ED. In our study targeting an innovative venue for osteoporosis care delivery, only about 1% of patients at high-risk of fracture scheduled BMD testing after an ED visit. Adequate resources during and after an ED visit are needed to ensure that older adults participate in preventative osteoporosis care.

Defining the key clinician skills and attributes for competency in managing patients with osteoporosis and fragility fractures.

Osteoporosis and fragility fractures are managed by clinicians across many medical specialties. The key competencies of clinicians delivering bone health care have not been systematically established. We aimed to develop a decision rule to define the threshold of adequate skills and attributes associated with clinical competency in bone health for a clinician serving as a referral source for bone health care. Using a modified-Delphi method, we invited clinicians with expertise in treating osteoporosis and representatives of patient advocacy groups focused on bone health to create a list of desirable characteristics of a clinician with bone health competency. Characteristics were defined as "attributes" with "levels" within each attribute. Participants prioritized levels by perceived importance. To identify the cut points for defining adequate competency, participants next ranked 20 hypothetical clinicians defined by various levels of attributes from highest to lowest likelihood of having adequate bone health competency. Lastly, we conducted a discrete choice experiment (DCE) to generate a weighted score for each attribute/level. The threshold for competency was a priori determined as the total weighted score at which ≥70% of participants agreed a clinician had adequate bone health competency. Thirteen participants generated lists of desirable characteristics, and 30 participants ranked hypothetical scenarios and participated in the DCE. The modified-Delphi exercise generated 108 characteristics, which were reduced to 8 categories with 20 levels with associated points. The maximum possible score was 25 points. A summed threshold score of >12 points classified a clinician as having adequate bone health competency. We developed a numeric additive decision rule to define clinicians across multiple specialties as having adequate competency in managing bone health/osteoporosis. Our data provide a rigorously defined criteria for a clinician with competency in bone health and can be used to quantitate the skills of clinicians participating in bone health research and clinical care.

Osteoporosis and fragility fractures are managed by clinicians across many medical specialties. The key skills of clinicians delivering bone health care have not been systematically established. We invited clinicians with expertise in treating osteoporosis and representatives of patient advocacy groups focused on bone health to create a list of desirable characteristics of a clinician with bone health competency. Participants next ranked 20 hypothetical clinicians defined by various characteristics from highest to lowest likelihood of having adequate bone health competency. Lastly, we generated a weighted score for each characteristic. The threshold for competency was determined as the total weighted score at which ≥70% of participants agreed a clinician had adequate bone health competency. The maximum possible score was 25 points, and a summed threshold score of >12 points classified a clinician as having adequate bone health competency. Our data provide a rigorously defined criteria for a clinician with competency in bone health and can be used to quantitate the skills of clinicians participating in bone health research and clinical care.

Sociodemographic profiles and organ damage accural in the Black Women's Experience Living with Lupus study.

OBJECTIVE: Black/African American women with systemic lupus erythematosus (SLE) experience greater organ damage and at younger ages than white women. The objective of this study was to advance research on SLE inequities by identifying sociodemographic risk profiles associated with organ damage accrual specifically among Black/African American women. METHODS: Latent profile analysis was conducted among 438 Black/African American women with SLE living in Atlanta, GA and enrolled in the Black Women's Experiences Living with Lupus (BeWELL) Study (May 2015 to April 2017). Proportional hazard and Poisson regression models examined prospective associations between sociodemographic profiles and the timing and degree of organ damage accrual over 2 years. RESULTS: Four profiles emerged: (1) "Younger/Lower SES with Uncontrolled SLE" (44.8%), (2) "Older/Lower SES with Uncontrolled SLE" (23.3%), (3) "Mid-SES with Controlled SLE" (19.6%), and (4) "Higher SES with Controlled SLE" (11.2%). Approximately 42% of participants experienced new organ damage during the follow-up period. Proportional hazard models indicated that "Older/Lower SES with Uncontrolled SLE" participants were at greatest risk of new organ damage (HR = 2.41; 95% CI = 1.39, 4.19), followed by "Younger/Lower SES with Uncontrolled SLE" participants (HR = 1.56; 95% CI = 0.92, 2.67), compared to those in the "Higher SES with Controlled SLE" profile. Poisson regression models revealed that these two groups also exhibited greater organ damage accrual (b = 0.98, SE = 0.24, 95% CI = 0.52, 1.44 and b = 0.72, SE = 0.23, 95% CI = 0.27, 1.17, respectively). CONCLUSIONS: Black/African American women with fewer socioeconomic resources and uncontrolled SLE are at greatest risk for increasing disease severity over time. Social inequities likely contribute to racial inequities in SLE progression.

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.

Cardiovascular disease in spondyloarthritis: a narrative review of risk factors and the effect of treatments.

PURPOSE OF REVIEW: This review summarizes the recent evidence available regarding the epidemiology of cardiovascular disease in spondyloarthritis (SpA), including the effect of disease modifying drugs on cardiovascular risk. RECENT FINDINGS: People with SpA suffer from an increased risk of cardiovascular disease compared to the general population. This elevated risk is explained by the high prevalence of traditional cardiovascular risk factors and inflammation from disease activity leading to endothelial dysfunction and accelerated atherosclerosis. Consequently, the American College of Cardiology/American Heart Association and the European League Against Rheumatism recommend enhanced cardiovascular risk screening in SpA patients. There is evidence from observational studies that methotrexate and tumor necrosis factor inhibitors reduce the risk of cardiovascular events in SpA. Unlike what is observed in the general population, the use of nonsteroidal anti-inflammatory drugs does not appear to increase cardiovascular disease risk in SpA. SUMMARY: Cardiovascular diseases are increasingly recognized in patients suffering from SpA, especially axial SpA and psoriatic arthritis. Cardiovascular diseases can cause significant morbidity, mortality, and add to the overall disease burden. Disease modifying drugs may mitigate some of the cardiovascular risk; however, a multidisciplinary team is needed to monitor patients and improve cardiovascular health status.

2022 American College of Rheumatology Guideline for the Prevention and Treatment of Glucocorticoid-Induced Osteoporosis.

OBJECTIVE: The objective is to update recommendations for prevention and treatment of glucocorticoid-induced osteoporosis (GIOP) for patients with rheumatic or nonrheumatic conditions receiving >3 months treatment with glucocorticoids (GCs) ≥2.5 mg daily. METHODS: An updated systematic literature review was performed for clinical questions on nonpharmacologic, pharmacologic treatments, discontinuation of medications, and sequential therapy. Grading of Recommendations Assessment, Development and Evaluation approach was used to rate the certainty of evidence. A Voting Panel achieved ≥70% consensus on the direction (for or against) and strength (strong or conditional) of recommendations. RESULTS: For adults beginning or continuing >3 months of GC treatment, we strongly recommend as soon as possible after initiation of GCs, initial assessment of fracture risks with clinical fracture assessment, bone mineral density with vertebral fracture assessment or spinal x-ray, and Fracture Risk Assessment Tool if ≥40 years old. For adults at medium, high, or very high fracture risk, we strongly recommend pharmacologic treatment. Choice of oral or intravenous bisphosphonates, denosumab, or parathyroid hormone analogs should be made by shared decision-making. Anabolic agents are conditionally recommended as initial therapy for those with high and very high fracture risk. Recommendations are made for special populations, including children, people with organ transplants, people who may become pregnant, and people receiving very high-dose GC treatment. New recommendations for both discontinuation of osteoporosis therapy and sequential therapies are included. CONCLUSION: This guideline provides direction for clinicians and patients making treatment decisions for management of GIOP. These recommendations should not be used to limit or deny access to therapies.

2022 American College of Rheumatology Guideline for the Prevention and Treatment of Glucocorticoid-Induced Osteoporosis.

OBJECTIVE: The objective is to update recommendations for prevention and treatment of glucocorticoid-induced osteoporosis (GIOP) for patients with rheumatic or nonrheumatic conditions receiving >3 months treatment with glucocorticoids (GCs) ≥2.5 mg daily. METHODS: An updated systematic literature review was performed for clinical questions on nonpharmacologic, pharmacologic treatments, discontinuation of medications, and sequential therapy. Grading of Recommendations Assessment, Development and Evaluation approach was used to rate the certainty of evidence. A Voting Panel achieved ≥70% consensus on the direction (for or against) and strength (strong or conditional) of recommendations. RESULTS: For adults beginning or continuing >3 months of GC treatment, we strongly recommend as soon as possible after initiation of GCs, initial assessment of fracture risks with clinical fracture assessment, bone mineral density with vertebral fracture assessment or spinal x-ray, and Fracture Risk Assessment Tool if ≥40 years old. For adults at medium, high, or very high fracture risk, we strongly recommend pharmacologic treatment. Choice of oral or intravenous bisphosphonates, denosumab, or parathyroid hormone analogs should be made by shared decision-making. Anabolic agents are conditionally recommended as initial therapy for those with high and very high fracture risk. Recommendations are made for special populations, including children, people with organ transplants, people who may become pregnant, and people receiving very high-dose GC treatment. New recommendations for both discontinuation of osteoporosis therapy and sequential therapies are included. CONCLUSION: This guideline provides direction for clinicians and patients making treatment decisions for management of GIOP. These recommendations should not be used to limit or deny access to therapies.

A multi-step approach to develop a "storytelling" intervention to improve patient gout knowledge and improve outpatient follow-up.

Background: "Storytelling" interventions influence knowledge, attitudes and behavior to promote chronic disease management. We aimed to describe the development of a video "storytelling" intervention to increase gout knowledge and promote adherence to medications and follow-up care after an acute gout flare visit in the emergency department. Methods: We developed a direct-to-patient storytelling intervention to mitigate modifiable barriers to gout care and promote outpatient follow-up and medication adherence. We invited adult patients with gout as storytellers. We utilized a modified Delphi process involving gout experts to identify key themes to guide development of an intervention. Using a conceptual model, we selected stories to ensure delivery of evidence-based concepts and to maintain authenticity. Results: Our video-based storytelling intervention consisted of segments addressing modifiable barriers to gout care. Four diverse gout patients were recruited as storytellers and interviewed with questions that covered gout diagnosis and care. Eleven international gout experts from diverse geographic locations generated and ranked items they considered important messages to promote outpatient gout care follow-up and treatment adherence. Filmed videos were truncated into segments and coded thematically. Distinct segments that captured desired messages were combined to form a cohesive narrative story based on gout patient experiences that conveyed evidence-based strategies to manage gout. Conclusions: Using the Health Belief Model, we developed a culturally appropriate narrative intervention containing "storytelling" that can be tested as an approach to improve gout outcomes. The methods we describe may be generalizable to other chronic conditions requiring outpatient follow-up and medication adherence to improve outcomes.

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.

Clinical Features Associated With Rate of Fractures in Patients With Systemic Sclerosis: A US Cohort Study.

OBJECTIVE: Systemic sclerosis (SSc) is associated with several specific risk factors for fracture due to the complications of the disease and related medications. The present study was undertaken to examine the relationship between SSc-associated clinical features and fracture rate in a large US cohort. METHODS: Participants with SSc in FORWARD, The National Databank for Rheumatic Diseases, were included (1998-2019). Age- and sex-matched individuals with osteoarthritis (OA) from the same database were included as comparators. The primary end point was self-reported major osteoporotic fracture. Cox proportional hazards models were used to study the associations between risk factors and fractures. RESULTS: The study included 922 individuals (SSc patients, n = 154; OA patients, n = 768). Eighty-seven percent were female, with a mean age of 57.8 years. Fifty-one patients developed at least 1 fracture during a median of 4.2 years (0.5-22.0 years) of follow-up. Patients with SSc had more frequent fractures compared to OA comparators (hazard ratio [HR] 2.38 [95% confidence interval (95% CI) 1.47-3.83]). Among patients with SSc, a higher Rheumatic Disease Comorbidity Index score (HR 1.45 [95% CI 1.20-1.75]) and a higher Health Assessment Questionnaire disability index score (HR 3.83 [95% CI 2.12-6.93]) were associated with more fractures. Diabetes mellitus (HR 5.89 [95% CI 2.51-13.82]) and renal disease (HR 2.43 [95% CI 1.10-5.37]) were independently associated with fracture among SSc patients relative to SSc patients without these comorbidities. CONCLUSION: Our findings highlight factors associated with fracture among patients with SSc. Disability as measured by the HAQ DI is a particularly strong indicator of fracture rate in SSc. Improving SSc patients' functional status, where possible, may lead to better long-term outcomes.

Development and Validation of an Emergency Department Electronic Medical Record Gout Flare Alert.

OBJECTIVE: Patients with acute gout are frequently treated in the emergency department (ED) and represent a typically underresourced and understudied population. A key limitation for gout research in the ED is the timely ability to identify acute gout patients. Our goal was to refine a multicriteria, electronic medical record alert for gout flares and to determine its diagnostic characteristics in the ED. METHODS: The gout flare alert used electronic medical record data from ED nursing notes and was triggered by the term 'gout' preceding past medical history in the chief complaint, the term 'gout' and a musculoskeletal problem in the chief complaint, or the term 'gout' in the problem list and a musculoskeletal chief complaint. We validated its diagnostic properties to assess presence/absence of gout through manual medical record review using adjudicated expert consensus as the gold standard. RESULTS: In January 2020, we analyzed 202 patient records from 2 university-based EDs; from these records, 57 patients were identified by our gout flare alert, and 145 were identified by other means as potentially having an acute gout flare. The gout flare alert's positive predictive value was 47% (95% confidence interval [95% CI] 34-60%), negative predictive value was 94% (95% CI 90-98%), sensitivity was 75% (95% CI 61-89%), and specificity was 82% (95% CI 76-88%). The diagnostic properties were similar at both institutions. CONCLUSION: Our multicomponent gout flare alert had reasonable sensitivity and specificity, albeit a modest positive predictive value. An electronic gout flare alert may help enable the conduct of gout research in the ED setting.

Remote Management of Osteoporosis.

Purpose of Review: Osteoporosis management has evolved significantly over the past decade, with telehealth emerging as an effective tool to manage bone health in a growing patient population. This review explores the advantages and disadvantages of telehealth use for osteoporosis management while highlighting recent studies of clinical importance. Recent Findings: A wide variety of telehealth approaches are used today, from phone or video telemedicine appointments with physicians and advanced practice providers, to electronic systems for triage and consultation with osteoporosis specialists. Contemporary studies show that telehealth can facilitate health care access to underserved communities and enhance physician-patient communication, as well as provide patient education. However, barriers such as inexperience or lack of access to technology, suboptimal patient-clinician relationship building process, and difficulties with follow-up have limited the use of telehealth to certain situations. Summary: Telehealth has proven to be an effective resource for managing and treating osteoporosis patients. As its use continues to grow, important limitations must be accounted for to avoid lapses in care. Further research should keep these factors in mind as the use of this technology progresses.

Environmental and societal factors associated with COVID-19-related death in people with rheumatic disease: an observational study.

Background: Differences in the distribution of individual-level clinical risk factors across regions do not fully explain the observed global disparities in COVID-19 outcomes. We aimed to investigate the associations between environmental and societal factors and country-level variations in mortality attributed to COVID-19 among people with rheumatic disease globally. Methods: In this observational study, we derived individual-level data on adults (aged 18-99 years) with rheumatic disease and a confirmed status of their highest COVID-19 severity level from the COVID-19 Global Rheumatology Alliance (GRA) registry, collected between March 12, 2020, and Aug 27, 2021. Environmental and societal factors were obtained from publicly available sources. The primary endpoint was mortality attributed to COVID-19. We used a multivariable logistic regression to evaluate independent associations between environmental and societal factors and death, after controlling for individual-level risk factors. We used a series of nested mixed-effects models to establish whether environmental and societal factors sufficiently explained country-level variations in death. Findings: 14 044 patients from 23 countries were included in the analyses. 10 178 (72·5%) individuals were female and 3866 (27·5%) were male, with a mean age of 54·4 years (SD 15·6). Air pollution (odds ratio 1·10 per 10 µg/m3 [95% CI 1·01-1·17]; p=0·0105), proportion of the population aged 65 years or older (1·19 per 1% increase [1·10-1·30]; p<0·0001), and population mobility (1·03 per 1% increase in number of visits to grocery and pharmacy stores [1·02-1·05]; p<0·0001 and 1·02 per 1% increase in number of visits to workplaces [1·00-1·03]; p=0·032) were independently associated with higher odds of mortality. Number of hospital beds (0·94 per 1-unit increase per 1000 people [0·88-1·00]; p=0·046), human development index (0·65 per 0·1-unit increase [0·44-0·96]; p=0·032), government response stringency (0·83 per 10-unit increase in containment index [0·74-0·93]; p=0·0018), as well as follow-up time (0·78 per month [0·69-0·88]; p<0·0001) were independently associated with lower odds of mortality. These factors sufficiently explained country-level variations in death attributable to COVID-19 (intraclass correlation coefficient 1·2% [0·1-9·5]; p=0·14). Interpretation: Our findings highlight the importance of environmental and societal factors as potential explanations of the observed regional disparities in COVID-19 outcomes among people with rheumatic disease and lay foundation for a new research agenda to address these disparities. Funding: American College of Rheumatology and European Alliance of Associations for Rheumatology.

Satisfaction with modes of telemedicine delivery during COVID-19: A randomized, single-blind, parallel group, noninferiority trial.

BACKGROUND: Little is known about satisfaction with different modes of telemedicine delivery. The objective of this study was to determine whether patient satisfaction with phone-only was noninferior to video visits. METHODS: We conducted a parallel group, randomized (1:1), single-blind, noninferiority trial in multispecialty clinics at a tertiary academic medical center. Adults age ≥ 60 years or with Medicare/Medicaid insurance were eligible. Primary outcome was visit satisfaction rate (9 or 10 on a 0-10 satisfaction scale). Noninferiority was determined if satisfaction with phone-only (intervention) versus video visits (comparator) was no worse by a -15% prespecified noninferiority margin. We performed modified intent-to-treat (mITT) and per protocol analyses, after adjusting for age and insurance. RESULTS: 200 participants, 43% Black, 68% women completed surveys. Visit satisfaction rates were high. In the mITT analysis, phone-only visits were noninferior by an adjusted difference of 3.2% (95% CI, -7.6% to 14%). In the per protocol analysis, phone-only were noninferior by an adjusted difference of -4.1% (95% CI, -14.8% to 6.6%). The proportion of participants who indicated they preferred the same type of telemedicine visit as their next clinic visit were similar (30.2% vs 27.9% video vs phone-only, p = 0.78) and a majority said their medical concerns were addressed and would recommend a telemedicine visit. CONCLUSIONS: Among a group of diverse, established older or underserved patients, the satisfaction rate for phone-only was noninferior to video visits. These findings could impact practice and policies governing telemedicine.

Telemedicine in rheumatology care: A systematic review.

OBJECTIVE: The COVID-19 pandemic led to a sudden uptake of telemedicine in rheumatology. We analyzed the recent published literature on telemedicine for the diagnosis and management of inflammatory, non-inflammatory and/or autoimmune rheumatic diseases. METHODS: We performed a registered systematic search (CRD42020202063) for interventional or observational studies published between August 2015 and January 2022. We included studies of telemedicine that reported outcomes (e.g., satisfaction, disease activity, quality of life) in ten or more people with rheumatic disease. Reviewers screened manuscripts, extracted data, and assessed bias. RESULTS: Of the 2,988 potentially eligible studies, 36 reports were included: 27 observational studies, 7 randomized clinical trials, and 2 controlled clinical trials. Studies focused on general rheumatology (n = 18), rheumatoid arthritis (n = 9), gout (n = 3), osteoarthritis (n = 2), unspecified inflammatory arthritis (n = 1), osteoporosis (n = 2), and systemic lupus erythematosus (n = 1). Patient satisfaction with telemedicine was the most common reported outcome (n = 23) with majority of studies demonstrating high levels of satisfaction. Among interventional studies, the effect of telemedicine on the primary outcomes varied, with most finding that telemedicine was as good as usual / in-person care for disease activity control, patient satisfaction, total societal costs, and other patient reported outcomes. Effectiveness and feasibility were high across studies, though most demonstrated a high risk of bias. Meta-analysis was not feasible given the heterogeneity of interventions and outcome instruments utilized. CONCLUSION: Although the number of studies to date is low, telemedicine may be an effective mode to deliver care for people with rheumatic diseases. Most studies demonstrated limitations due to study design and risk of bias. Randomized clinical studies are needed to determine best uses of telemedicine for the diagnosis and management of rheumatic conditions.

Experience with telemedicine among rheumatology clinicians during the COVID-19 pandemic: an international survey.

Objective: The aim was to assess rheumatology clinicians' perceptions of telemedicine and their experiences before and during the coronavirus disease 2019 (COVID-19) pandemic. Methods: We conducted a cross-sectional online survey and collected responses from rheumatology clinicians worldwide, between November 2020 and February 2021, regarding use and perceptions of telemedicine in rheumatology. We summarized data with descriptive statistics and qualitative analysis for free-text responses. Results: The survey was completed by 349 rheumatology clinicians from 49 countries; 59% were female and about two-thirds were in the 30-50 years age group. Academic affiliations were held by 55% of participants, and 44% were from North America. Before the pandemic, 24% of participants had experience with telemedicine, whereas about three-quarters used telemedicine for the first time during the pandemic. Overall, 56% thought they provided less adequate care with telemedicine. More than half of clinicians felt that telemedicine was adequate for evaluating crystalline arthritis, inflammatory arthritis and lupus flares. Telemedicine was felt to be inadequate for flares of myositis, vasculitis and scleroderma. Technical problems were reported in 29% of telemedicine encounters and were most commonly related to patient-encountered difficulties. Conclusion: Most rheumatology clinicians used telemedicine for the first time during the pandemic. The quality of care provided was thought to be inferior to that provided in person for specific clinical situations. Additional efforts are needed to address barriers to effective telemedicine, such as patient-related technology issues, challenges with building rapport and performing a physical examination, and to define the appropriate scope of clinical scenarios conducive to telemedicine.

Integration of stakeholder engagement from development to dissemination in genomic medicine research: Approaches and outcomes from the CSER Consortium.

PURPOSE: There is a critical need for genomic medicine research that reflects and benefits socioeconomically and ancestrally diverse populations. However, disparities in research populations persist, highlighting that traditional study designs and materials may be insufficient or inaccessible to all groups. New approaches can be gained through collaborations with patient/community stakeholders. Although some benefits of stakeholder engagement are recognized, routine incorporation into the design and implementation of genomics research has yet to be realized. METHODS: The National Institutes of Health-funded Clinical Sequencing Evidence-Generating Research (CSER) consortium required stakeholder engagement as a dedicated project component. Each CSER project planned and carried out stakeholder engagement activities with differing goals and expected outcomes. Examples were curated from each project to highlight engagement strategies and outcomes throughout the research lifecycle from development through dissemination. RESULTS: Projects tailored strategies to individual study needs, logistical constraints, and other challenges. Lessons learned include starting early with engagement efforts across project stakeholder groups and planned flexibility to enable adaptations throughout the project lifecycle. CONCLUSION: Each CSER project used more than 1 approach to engage with relevant stakeholders, resulting in numerous adaptations and tremendous value added throughout the full research lifecycle. Incorporation of community stakeholder insight improves the outcomes and relevance of genomic medicine research.