OBJECTIVES:Our objective was to describe the social networks of Black individuals with rheumatic and musculoskeletal conditions and understand the clustering of health-related behaviors to inform future community-based, peer-led interventions. METHODS:We used an adapted Personal Network Survey for Clinical Research (PERSNET) to map the personal social networks of Black individuals with rheumatic conditions in Boston and Chicago. We used egocentric network analyses to quantify network composition, and descriptive statistics and Welch's two-sample t-tests to assess network characteristics and behavioral concordance between participants and their network members. RESULTS:We mapped the social networks of 40 individuals with rheumatic conditions in Boston and Chicago. All participants self-identified as Black, with 6 indicating Hispanic or Latino ethnicity. One participant self-identified as male. Networks had a median size of 10, with 54% of all possible ties present and an average of 5 structurally distinct connections within each network. Boston networks had a larger proportion of kin (71%) compared to those in Chicago (40%). There was greater diversity in sex and education within Boston networks. Chicago networks displayed morelanced strong and weak ties and higher prevalence of health problems within networks. Smoking and drinking behaviors clustered within networks across both sites, which may reflect patterns of behavioral homophily or social influence. CONCLUSIONS:Differences in network density, constraint, and diversity highlight structural and relational patterns that may influence how health behaviors develop. They also reveal network configurations that position individuals to act as bridges, introducing new information and behaviors into communities where medical mistrust and systemic inequities undermine health messaging.
Interstitial lung disease (ILD) is a significant cause of morbidity and mortality in patients with inflammatory rheumatic disorders (IRDs). High-resolution computed tomography (HRCT) is widely considered the gold standard for the noninvasive assessment of ILD; however, its interpretation is constrained by substantial interobserver variability and the need for time-consuming expert evaluation. Computer-based image analysis, including artificial intelligence, has emerged as a promising approach for the automated, objective, and quantitative analysis of HRCT images. This method enables precise volumetric assessment of parenchymal alterations and facilitates pattern classification with unprecedented accuracy and efficiency. This review synthesizes current evidence on computational driven HRCT quantification in IRD-ILD, highlighting available technical approaches, validation strategies, and clinical applications.
OBJECTIVE:Osteoarthritis (OA) is a leading cause of joint pain and people often self-manage their symptoms before seeking support. Community pharmacies are accessible and well-placed to support people with OA using pharmacological and non-pharmacological approaches. Current policy recommends that pharmacies should be integrated into long-term condition management pathways. This study aimed to explore the experiences of people with OA engaging with community pharmacy staff for their joint problems, and their views about an extended community pharmacy role for OA. DESIGN:A multi-method study with surveys of people with OA who were recruited through general practices in two geographical areas of the United Kingdom (UK), followed by qualitative interviews with respondents who consented to further contact. Survey data underwent descriptive statistical analysis, whilst qualitative data were analysed using reflexive thematic analysis, mapped to the Theoretical Domains Framework. RESULTS:In 450 survey responses and 18 interviews, people with OA reported that current community pharmacy OA care focused on advice about medicines and sometimes included self-care advice. There was support for an extended role for OA management in community pharmacy that focused on explaining the joint problem and its treatment, medicines optimisation and support for self-care (including exercise and weight management). However, there was uncertainty about whether community pharmacists should diagnose OA. A reported key facilitator to this extended role was pharmacy staff training, and barriers included high workloads and limited access to medical records. CONCLUSION:Current community pharmacy care for people with OA could be extended and include a greater focus on supported self-care.
OBJECTIVE:In Australia, anti-MDA5 antibodies are exclusively tested by a line immunoblot assay (LIA). The clinical concordance of an LIA-positive anti-MDA5 result is unclear. We aimed to describe the clinical features and determine the clinical concordance of patients with anti-MDA5 antibodies. METHODS:Electronic records of a multisite cohort (patients with positive anti-MDA5 on LIA from three states in Australia from January 2017 to September 2024) were reviewed for clinical features of dermatomyositis (cutaneous manifestations, proximal weakness, interstitial lung disease [ILD]), laboratory investigations and other myositis autoantibodies, and imaging pertaining to the muscles and lungs. RESULTS:Complete clinical data were available for 108 of 118 patients with anti-MDA5 antibodies. A positive test was determined to be clinically concordant in 21 of 108 (19.4%) patients; these patients had higher signal intensity than those with clinical discordance (52 vs 19.5; P < 0.0001). The median age was 65 years (interquartile range 48-74), and 67% were female. The cohort was predominantly White (n = 14), followed by Southeast Asian (n = 3), African (n = 3), and Middle Eastern (n = 1). All 21 patients with anti-MDA5 dermatomyositis had ILD; 7 of 9 with rapidly progressive ILD (RP-ILD) were deceased at time of review. Patients with RP-ILD had higher ferritin levels (1,226 vs 262 μg/L; P < 0.05) and a higher neutrophil to lymphocyte ratio (4.1 vs 2.6; P < 0.05) than patients without RP-ILD. Pneumomediastinum developed in 7 of 21 (33%); of these, 6 had RP-ILD, and 4 subsequently died. Other manifestations included myositis (n = 8), cutaneous features (n = 14), polyarthritis (n = 6), and myocarditis (n = 1). CONCLUSION:Higher anti-MDA5 signal intensity on LIA was associated with greater clinical concordance. Pneumomediastinum is common and associated with high mortality.
OBJECTIVE:The aim of this study was to test the hypothesis that multijoint osteoarthritis would modify the relation between time and frailty progression, in which more affected joints would lead to larger declines over six years compared to those without osteoarthritis using data from the Canadian Longitudinal Study on Aging. METHODS:Frailty was quantified using a frailty index at baseline, three-year, and six-year follow-up. Osteoarthritis was self-reported physician diagnosis of knee, hip, or hand. Participants were categorized as having none, one, two, or three affected joints at baseline. Linear mixed-effects models adjusted for age, body mass index, marital status, sitting time, light-moderate physical activity, strenuous physical activity, and sex were performed to test the interaction between time and multijoint osteoarthritis on frailty trajectories over six years. RESULTS:A total of 13,757 participants were included (mean frailty: 0.16 ± 0.05); 10,193 had no osteoarthritis, 2,535 had one affected joint, 806 had two affected joints, and 223 had three affected joints. Individuals without osteoarthritis had the lowest baseline frailty, followed stepwise by the one-joint group, two-joint group, and three-joint group (P < 0.001). Baseline multijoint osteoarthritis was positively associated with frailty progression over six years (β = 0.105, 95% confidence interval [CI] 0.027-0.170). Frailty slopes across groups were the following: no osteoarthritis (β = 0.237, 95% CI 0.225-0.247), one-joint group (β = 0.293, 95% CI 0.262-0.310), two-joint group (β = 0.348, 95% CI 0.327-0.368), and three-joint group (β = 0.330, 95% CI 0.291-0.371). Frailty progressed faster in multijoint group (at least two joints) versus single-joint osteoarthritis (β = 0.070, 95% CI 0.029-0.109). CONCLUSION:Individuals with osteoarthritis affecting two or three joints experienced a 40% to 47% faster rate of frailty progression compared with those without osteoarthritis despite starting at a higher baseline frailty, highlighting multijoint involvement as a marker of heightened risk of accumulating health deficits.
OBJECTIVE:Cardiorespiratory fitness (CRF) is reduced in patients with psoriatic arthritis (PsA), highlighting the need for a consistent assessment of CRF in clinical practice. This study aimed to examine the associations between outcomes of clinical field tests, namely six-minute walk test (6MWT) and handgrip strength (HGS), and CRF, as well as to evaluate the accuracy of these clinical field tests in detecting impaired CRF in patients with PsA. METHODS:Distance walked during 6WMT (six-minute walk distance [6MWD]), HGS by hand dynamometry, and maximal CRF as peak oxygen uptake (VO2peak, milliliters per minute per kilogram) by cardiopulmonary exercise testing were assessed. 6MWD and HGS were compared to reference charts of the general population using one-sided t-tests. Spearman rank correlation coefficients (rs), multivariable linear regression models, and receiver operating curves were analyzed to study associations. RESULTS:In 80 patients with PsA, 6MWD was strongly associated with VO2peak (rS = 0.65, P < 0.001), with the multivariable linear regression model, consisting of 6MWD and 6MWT heart rate response and adjusted for relevant covariates, explaining 70% of variance in VO2peak. The threshold of 108% predicted 6MWD had sensitivity of 75% and specificity of 64% to identify patients with impaired CRF. 6MWD and HGS were not significantly decreased compared to the general population (P > 0.05). A higher 6MWD was moderately to strongly correlated with more favorable outcomes regarding disease activity, cardiometabolic risk, and patient-reported outcomes. No or only weak associations between HGS and VO2peak as well as clinical outcomes were noted. CONCLUSION:6MWD was strongly associated with VO2peak, was moderately to strongly correlated with important clinical outcomes, and had adequate accuracy to detect patients with impaired CRF.
OBJECTIVE:Systemic sclerosis (SSc) is associated with numerous facial manifestations for which patients may engage in cosmetic therapies. It is unclear how patients with SSc use these therapies. This study sought to characterize patient engagement and experiences with cosmetic therapies for SSc-related and non-SSc-related facial changes. METHODS:Patients with SSc enrolled in the Australian Scleroderma Cohort Study at three Australian public tertiary hospitals and one private practice were invited to complete a de-identified questionnaire. Participants were asked about their engagement and perceived outcomes with cosmetic therapies including topical cosmeceuticals, injectable therapies, energy-based devices or laser therapies, and surgical procedures for facial changes. Descriptive statistics were analyzed. RESULTS:Of the 616 patients invited, 241 participants completed the questionnaire with 119 responders (49.4%) reporting that they had previously or were currently considering a facial cosmetic therapy and 55 (22.8%) reporting use of at least one therapy. Of those who considered but did not go ahead with a therapy, 32 (50.0%) did not proceed due to cost and 24 (37.5%) due to safety concerns. A total of 159 facial cosmetic therapies were reported. These included topical cosmeceuticals (42.1%), injectable therapies (32.1%), energy-based devices or laser therapies (22.6%), and surgical procedures (2.5%). Almost two thirds (64.2%) were performed for SSc-related facial changes. Responders reported perceived improvement with 116 cosmetic therapies (73.0%) and adverse events for 25 (15.7%). Most adverse events were mild. CONCLUSION:Patients with SSc engage broadly with cosmetic therapies for both SSc-related and non-SSc-related facial changes. Most users reported subjective improvement, and few serious adverse effects were reported.
OBJECTIVE:A data-driven and expert/patient consensus-based project to develop a revised Systemic Lupus International Collaborating Clinics (SLICC)/American College of Rheumatology (ACR) Damage Index (SDI) is under way supported by SLICC, ACR, and the Lupus Foundation of America. Our objective is to report the item generation and reduction phase results for a revised SDI. METHODS:Item generation included a literature review by literature review groups and a Delphi exercise of international systemic lupus erythematosus experts and patients. Item reduction involved Delphi rounds in which items with a median appropriateness score of ≤4 of 9 were excluded. A 14-member item reduction committee assessed remaining items and removed those that did not reflect the damage construct, were rare, or were not feasible to assess. The clinical domain groups then refined the remaining items and their definitions. RESULTS:The Delphi panel included 146 individuals from 35 countries. The Delphi exercise nominated 2,256 items, and the literature review identified 117 items. After removing redundancies, 226 candidate items remained. Subsequent Delphi rounds, followed by review by the item reduction committee and clinical domain groups, resulted in 39 items across 13 domains. Eleven items from the original SDI, including proteinuria and cranial neuropathy, were removed and several new items were proposed, including growth failure/reduced final height and adrenal insufficiency. Severity-based subitems are proposed for 17 items (43.6%). CONCLUSION:This data-driven and expert/patient consensus-based process has proposed 39 candidate items, some with subitems, and definitions for a revised SDI. Weighting of items and subitems is underway to develop a clinical scoring system.
OBJECTIVE:Despite guideline recommendations, long-term glucocorticoid (GC) use is common in rheumatoid arthritis (RA). We conducted a clinician survey nested within a large registry to identify patient and clinician factors associated with GC use. METHODS:Clinicians contributing patients to the CorEvitas Rheumatoid Arthritis Registry were surveyed between 2023 and 2024, capturing demographics, medication safety concerns, and a range of other attitudes. We then identified patients with RA initiating a new biologic or JAK inhibitor (JAKi). Patient factors associated with GC use six months after treatment initiation were assessed with a mixed-effects logistic regression model. Similar models assessed clinician factors associated with GC use at six months, adjusting for patient factors. RESULTS:Among 256 active clinicians, 92 (36%) responded to the survey, of which 81 had 3,966 qualifying patients, whereas 164 nonresponders had 3,196 qualifying patients. Higher disease activity, age ≤45 or >75 years, longer disease duration, more previous biologics/JAKi, lung disease, and earlier calendar year were associated with greater GC use at six months. Clinicians with less concern about prednisone ≤5 mg/day were more likely to prescribe GCs at six months (adjusted odds ratio [aOR] 1.98, confidence interval [CI] 1.17-3.36), but similar or stronger associations were seen for clinicians with less concern about biologics (aOR 2.47, 95% CI 1.33-4.49) or JAKi (aOR 2.35, 95% CI 1.31-4.22). CONCLUSION:Lower clinician concerns about GC, biologic, and JAKi safety were associated with greater GC prescribing, suggesting that broad attitudes toward prioritizing treatment benefits versus risks (rather than just specific GC concerns) may drive GC prescribing, with important implications for clinician education.
OBJECTIVE:To estimate the prevalence of moderate to severe joint pain among US adults with arthritis overall and by sociodemographic and health factors. Additionally, to assess progress toward the Healthy People 2030 goal of reducing the percent of US adults with arthritis reporting moderate to severe joint pain to 52.4%. METHODS:This cross-sectional study used National Health Interview Survey data to estimate the unadjusted and age-standardized prevalence of moderate to severe joint pain. Differences by sociodemographic and health characteristics and survey year (2019 and 2023) were assessed using t-tests. Data were weighted to account for the NHIS survey methodology. RESULTS:An estimated 58.5% of US adults with diagnosed arthritis (30.8 million) reported moderate to severe joint pain in 2023 (moderate: 32.4%, 17.1 million; severe: 26.1%, 13.8 million). Some of the largest age-adjusted differences by health status and sociodemographic characteristics were for self-rated health (excellent/very good [45.6%] compared to good [56.6%] and fair/poor [72.9%]), disability status (yes [77.1%], no [53.7%]), reporting depressive disorder symptoms (yes [76.1%], no [55.2%]), reporting anxiety disorder symptoms (yes [73.9%], no [54.0%]), chronic obstructive pulmonary disease (yes [72.4%], no [56.9%]), and cancer (yes [71.7%], no [58.1%]). There was no change in age-standardized moderate to severe joint pain between 2019 (56.8%) and 2023 (58.2%; p=0.46). CONCLUSION:Over half of US adults diagnosed with arthritis reported moderate to severe joint pain, with no progress toward the Healthy People 2030 goal from 2019 to 2023.Evidence-based interventions may reduce the prevalence of moderate to severe joint pain among adults with arthritis.
OBJECTIVE:Ambulatory care-sensitive conditions (ACSCs) serve as indicators of access, quality, and performance of the health system. This study aimed to determine rheumatoid arthritis (RA)-specific ACSCs for use in the evaluation of care system access and quality. METHODS:A modified Delphi process was conducted on the preventability and importance of hospitalization for candidate medical conditions determined from a systematic literature review. Clinical panelists included health care providers with expertise in the care of people with RA. Patient panelists were people living with RA. Clinical panelists completed two rounds of anonymous voting, with an asynchronous discussion board hosted between rounds. Patient panelists completed the same process considering the remaining conditions for which consensus had not yet been reached. An interactive webinar preceded a final combined panel voting round. Consensus criteria were guided by the RAND/UCLA Appropriateness Method. RESULTS:A total of 22 clinical and 8 patient panelists provided their expert opinion on 49 candidate conditions. At the conclusion of all voting rounds, 13 conditions were identified as proposed RA-specific ACSCs: those specific to RA disease activity (RA disease flare, vasculitis), RA-related associations and complications (anemia/pancytopenia, osteoporotic fracture, secondary osteoarthritis, cervical spine instability), and acute (upper respiratory infection, influenza/pneumonia, septic arthritis) and opportunistic infections (herpes zoster, tuberculosis reactivation, Pneumocystis jirovecii pneumonia, and other). CONCLUSION:Consensus was achieved for 13 proposed RA-specific ACSCs that could be used to monitor care access and quality for persons living with RA, determine population-level differences, and appropriately allocate resources. Next steps include operationalizing and testing performance of RA-specific ACSCs.
BACKGROUND:Patients with gout may be at high risk for developing osteoporosis and osteoporotic fractures, but osteoporosis may be under-recognized and inadequately managed for patients with gout. We aimed to describe osteoporotic fractures and diagnosis, DXA utilization, and bone protective therapy patterns in patients with gout and comparator groups. METHODS:We conducted a retrospective cohort study using the ACR RISE registry linked to Medicare claims (2015-2021), with 1:1 exact matching (age ±2 years, sex, race, enrollment quarter) to osteoarthritis (OA) and soft tissue rheumatism (STR) comparator patients. The sample size was determined by including all patients eligible for the study after removing those with exclusionary criteria (e.g., inconsistent age/sex and immunomodulation during the baseline period). We examined medications, labs, and bone protective therapies and computed crude and adjusted incidence rates (IRs) and incidence rate ratios (IRRs) for osteoporotic fractures. RESULTS:Only five percent of patients with gout used bone protective therapy at baseline, compared to 11.8% in OA. Baseline osteoporotic fracture and osteoporosis diagnosis prevalence was 1.4% and 7.1% in gout vs. 2.6% and 15.4% in OA patients. Approximately 9.0% of patients with gout and 23.2% with STR used bone protective therapy at baseline. Baseline osteoporotic fracture and osteoporosis diagnosis prevalence was 1.9% vs. 10.9% in OA and 3.4% vs. 30.7% in STR. Higher nonvertebral osteoporotic fracture rates were observed in patients with gout compared to OA (IRR: 1.4, 95% CI: 1.1,1.8) and STR (IRR: 2.0, 95% CI: 1.3,3.1). Bone protective therapies were infrequently used during follow-up (gout: 2.0% vs. OA: 4.5%; gout: 3.4% vs. STR: 10.3%). CONCLUSION:Patients with gout experienced greater rates of osteoporotic fracture and greater osteoporotic fracture risk factors (e.g. chronic kidney disease, greater glucocorticoid use) compared to OA and STR patients yet were less likely to receive bone protective therapies.
OBJECTIVE:For families navigating juvenile idiopathic arthritis (JIA) or systemic lupus erythematosus (SLE), effective communication with health care teams is vital. We examined how language preference other than English (LPOE) associates with patient-provider interactions and standardized outcome assessment. METHODS:In this retrospective cohort of patients with JIA or SLE at a tertiary care center (2016-2024), patients with LPOE were matched one-to-two to English language preference (ELP) counterparts by age, diagnosis, polyarticular course, and disease duration. We used multivariable negative binomial or logistic regression to compare rates of patient- and provider-initiated communications and adjusted for disease severity indicators and the COVID-19 pandemic period. Insurance and census tract-level Child Opportunity Index were evaluated in separate models. We secondarily compared rates of physician visual analog scale (PhVAS) completion. RESULTS:We matched 60 patients with JIA/SLE in families with LPOE to 107 counterparts with ELP. Families with LPOE initiated fewer communications in both unadjusted (incidence rate ratio [IRR] 0.45 [95% confidence interval [CI] 0.29-0.72]) and adjusted analyses (adjusted IRR [aIRR] 0.51 [95% CI 0.31-0.84]). Moreover, families with LPOE initiated 0.18-fold fewer communications during the COVID-19 pandemic (P < 0.001 for interaction). There was no significant difference in provider-initiated communication frequency by language preference. PhVAS were less often completed for families with LPOE (adjusted OR 0.58 [0.32-1.03]), but this difference was not statistically significant. CONCLUSION:Reduced communication frequency between families with LPOE with care teams may drive language-related disparities, particularly during periods of system stress. Enhanced outreach to families with barriers to health care engagement may facilitate more equitable care delivery.
OBJECTIVE:This study aimed to comprehensively describe patient experiences with opioid-related transitions (OrTs) and identify modifiable gaps in care to improve pain management for individuals with rheumatic disease (RD). METHODS:We conducted a qualitative descriptive study with 20 participants with RD who had used prescribed opioids in the past year. Semistructured interviews were analyzed using conventional content analysis. RESULTS:We identified four themes. The first, "managing together, deciding alone," included the following subthemes: (a) clinician guidance in opioid use decision-making, (b) family involvement in opioid decision-making and advocacy, (c) self-directed opioid use strategies, and (d) risk-reduction strategies to prevent opioid addiction, dependence, and tolerance. The second, "turbulence of opioid medication changes," included the following subthemes: (a) evolving and dynamic opioid regimens, (b) disrupted access to opioid medications, and (c) the toll of opioid medication changes. The third, "transitions across opioid prescribers," included the following subthemes: (a) context of opioid prescriber changes, (b) drivers of opioid prescriber changes, (c) navigating opioid prescriber changes, and (d) reassurance of trusting relationships during opioid prescriber changes. The fourth, "opioid transitions across care settings," included the following subthemes: (a) shifts in opioid management across care settings, (b) home to hospital transitions: delayed access and needed advocacy, and (c) hospital to home transitions: adequacy, engagement, and unmet needs. CONCLUSION:Patients with RD frequently experience OrTs across multiple clinicians and care settings. Findings highlight the complexity, risks, patient burden, and suboptimal outcomes associated with these transitions and underscore the need for improved care coordination and innovative support.
OBJECTIVE:Hydroxychloroquine (HCQ) is the cornerstone of systemic lupus erythematosus (SLE) management with benefits extending beyond SLE control, including protection against atherosclerotic cardiovascular disease (ASCVD). Although HCQ blood levels reflect recent exposure and long-term intake reflects medication adherence, the impact of longitudinal changes in both measures on ASCVD risk over time remains unclear. We evaluated how HCQ blood levels and long-term intake patterns relate to estimated ASCVD risk at baseline and after one year. METHODS:In this prospective longitudinal study, 248 adults with SLE from the Wisconsin cohort (meeting 2019 American College of Rheumatology/EULAR criteria) taking HCQ and completing baseline and one-year follow-up visits were included. Long-term HCQ intake was estimated using the proportion of days covered (PDC), and whole-blood HCQ levels served as a marker of recent exposure. Ten-year ASCVD risk was calculated at both time points using the PREVENT calculator. Multivariable linear regression assessed associations between HCQ exposure patterns and ASCVD risk. Changes in exposure categories over one year were also evaluated. RESULTS:Patients with very low HCQ blood levels (<200 ng/mL) and low long-term intake (PDC <80%) had significantly higher ASCVD risk at baseline (+2.1%) with a mean predicted risk of 6.6%. Those who remained in or transitioned into these low-exposure categories over one year had the highest ASCVD risk at follow-up (5.7%). CONCLUSION:Maintaining low long-term HCQ intake and very low HCQ blood levels increased ASCVD risk in patients with SLE. Interventions promoting sustained adherence and therapeutic HCQ levels may enhance cardiovascular outcomes and reduce unnecessary preventive therapies.
OBJECTIVE:To evaluate whether extending the American College of Rheumatology-recommended monitoring interval for complete blood count and liver function tests in patients receiving methotrexate (MTX) affects timely detection of medication-related toxicity. METHODS:We conducted an observational cohort analysis of 14,199 laboratory encounters from 2,439 patients receiving MTX with at least two measurements of alanine aminotransferase (ALT), aspartate aminotransferase (AST), white blood cell (WBC) count, hematocrit (HCT), mean corpuscular volume (MCV), and/or platelet (PLT) count. Fibrosis-4 (FIB-4) scores were calculated when possible. Changes between consecutive measurements were plotted against time between encounters. Monitoring intervals of three months (45-135 days) and six months (135-225 days) were compared. After propensity score matching, we assessed incident clinically relevant abnormalities. RESULTS:Testing frequency showed no meaningful correlation with changes in ALT, AST, WBC, HCT, MCV, PLT, or FIB-4 (all R2 < 0.01). Mean laboratory changes did not differ meaningfully between monitoring intervals. Patients monitored every 135 to 225 days were equally or less likely to develop incident abnormal results than those monitored every 45 to 135 days; most odds ratios (ORs) were not statistically significant (P > 0.05). Patients in the six-month group were less likely to develop ALT >1× upper limit of normal (OR 0.72 [95% confidence interval (CI) 0.52-0.99]) or MCV >100 fL (OR 0.67 [95% CI 0.46-0.96]). CONCLUSION:Extending routine MTX monitoring from every three months to every six months was not associated with more severe abnormalities or delayed detection of toxicity, suggesting quarterly testing may be more frequent than necessary and could be reconsidered to reduce cost and patient burden.
OBJECTIVE:Uncontrolled gout (UG) refers to persistently elevated serum urate (SU) levels >6 mg/dL and ongoing gout symptoms despite use of urate-lowering therapy (ULT). The objective of this study was to evaluate the burden associated with informal caregiving for individuals with UG. METHODS:To inform survey development, concept elicitation (CE) interviews were conducted with informal caregivers of patients with UG between April and May 2024. A separate cohort of informal caregivers meeting the same eligibility criteria was recruited via physician panels to complete a web-based, cross-sectional survey between January and February 2025. Survey outcomes included caregiver health-related quality of life (HRQOL), productivity, and 12-month patient health care resource use. RESULTS:Four caregivers participated in CE interviews, which informed survey development. Separately, 40 caregivers completed the survey. Survey respondents were predominantly female (73%) and had a mean age of 55.1 (SD 10.6) years, and most (73%) were spouses/partners of patients with UG. UG affected caregivers' HRQOL, with more than 30% feeling at least "quite a bit" stressed, overwhelmed, or physically exhausted/drained. Between 36% and 50% of caregivers reported at least "moderate" burden associated with assisting patients with UG treatment, depending on the ULT used. Caregivers reported a 41% reduction in their ability to perform daily activities overall, and among those employed, they reported a 36% reduction in their ability to work. On average, employed caregivers missed 2.7 hours of work in the prior seven days due to caregiving responsibilities. CONCLUSION:Caring for a patient with UG substantially negatively impacted caregivers' HRQOL and interfered with caregivers' ability to work and perform daily activities.
OBJECTIVE:To evaluate utility of an artificial intelligence (AI) health coach for systemic sclerosis (SSc) self-management and identify patterns associated with participant engagement. METHODS:We conducted a mixed methods study in which an AI health coach, powered by a large language model (LLM), was used to support self-management for SSc. Twenty individuals with SSc interacted with the AI health coach over four weeks. Quantitative usage metrics (number of conversations, user messages, and chat duration) were used to classify participants into high- and low-engagement groups. A qualitative inductive content analysis of chat transcripts was used to identify the purpose of interactions. Quantitative and qualitative data were integrated using a joint display approach. RESULTS:Twenty participants (90% female; mean age 55 years) used the AI health coach for goals and strategies, information seeking, companionship, and disease monitoring. Participants with high engagement (N = 8) had more coded interactions related to goals and strategies (23.6 vs 5.1), information seeking (10.8 vs 3.9), and companionship (7.9 vs 1.0) compared with those with low engagement (N = 12). More participants in the high-engagement group used the AI health coach for companionship compared with the low-engagement group (100% vs 33%). Exploratory analyses suggested greater improvements in fatigue (mean change -5.04 [95% confidence interval -9.34 to -0.73]) among high-engagement participants, with no statistically significant between-group differences. CONCLUSION:Engagement with an AI health coach may not be fully captured by quantitative usage metrics alone. Engagement in our study was characterized by more frequent, action-oriented, and companionship-oriented interactions.
OBJECTIVE:Hand synovitis affects over 20% middle-aged and older adults. Although the roles of synovitis in hand pain and osteoarthritis are well established, its relationship with serious outcomes such as mortality remains uncertain. We investigated the association between hand synovitis and all-cause mortality. METHODS:In the population-based Xiangya Osteoarthritis Study (XO Study), participants underwent bilateral hand ultrasonography at baseline to assess synovitis (grades 0-3; ≥2 defined as positive). Mortality data were obtained from local registries. Cox proportional hazards models were employed to examine the association between hand synovitis and all-cause mortality, adjusting for age, age squared, sex, body mass index, educational level, alcohol consumption, smoking status, hand injury, physical activity level, radiographic hand osteoarthritis status, hypertension, hyperlipidemia, and the age-adjusted Charlson Comorbidity Index. RESULTS:Among 3,552 participants (mean ± SD age 64.4 ± 9.3 years, 57.9% women), 393 deaths occurred over a mean follow-up of 5.72 years. Ultrasound-detected hand synovitis was significantly associated with higher all-cause mortality (adjusted hazard ratio [aHR] 1.26, 95% confidence interval [CI] 1.01-1.58). Compared with no synovitis, bilateral involvement conferred a higher mortality than unilateral involvement (aHR 1.42 [95% CI 1.03-1.96] versus 1.20 [95% CI 0.93-1.54]). Mortality risk also increased with the number of affected joints (aHRs: 1.19 [95% CI 0.91-1.57] for one joint; 1.35 [95% CI 1.02-1.80] for more than one joint; P for trend < 0.05). In the exploratory analyses, the strongest association was observed for distal interphalangeal joint synovitis (aHR 1.82 [95% CI 1.14-2.91]). CONCLUSION:Hand synovitis, especially when bilateral or polyarticular, may serve as a marker of increased all-cause mortality risk, though future studies are needed to confirm and investigate this further. Ultrasound assessment offers a noninvasive and accessible approach to identify this potential biomarker for mortality risk.
