Objective: This study examines the application of the adaptive choice-based conjoint (ACBC) method to facilitate the shared decision-making (SDM) process for osteoarthritis (OA) treatment.
Methods: The study recruited adult OA patients attending the rheumatology/orthopaedics clinics in a local urban hospital in Abu Dhabi, United Arab Emirates (UAE). Participants completed a questionnaire regarding who influences their decision in selecting OA medication, followed by an ACBC questionnaire about OA medication preferences and a questionnaire about the potential contribution of ACBC to the SDM process. A univariate analysis was used to investigate the relationships between participant variables and factors that influence their decision-making processes. The chi-squared, Fisher's exact, Cramer's V coefficient test and multivariable logistic regression analysis were utilised. The primary outcome investigates the contribution of the ACBC method to the SDM process for OA treatment. Secondary outcomes measure the association between patient demographics and variables related to the SDM process and ACBC questionnaire.
Results: Five hundred patients participated in this study, with a response rate (RR) of 100%. Most study participants were 60-69 years old (34.8%), females (78.8%), and UAE nationals (90.4%). Patients' opinions and online/paper information influencing their decision in selecting OA medication had a statistically significant association with age, gender, education, and employment (P=0.001 - 0.039). Employment status showed the strongest association (φc=0.170) with being independent in making the decision about OA medications, while education levels showed the strongest association (φc=0.24) with decisions impacted by online/paper information. The results of the multivariable logistic analysis showed that the only statistically significant variable for online/paper information that influenced the decision in selecting OA medication was education level (p=0.003). Most participants agreed or strongly agreed that the ACBC predicted their preferences for OA treatment (96.8%), the questionnaire may help doctors understand patients' preferences (93%) and recommended the use of ACBC tool doctors' clinics to aid the SDM process (92.8%) between patients and their physicians.
Conclusions: ACBC approach can facilitate doctors' understanding of patients' preferences and aid the SDM process. Most OA patients are independent or influenced by their physician when making decisions about OA medication. Higher education and employment among OA patients are associated with a better involvement in the SDM process for available treatment.
Objectives: The gastrointestinal tract (GIT) is the most commonly affected internal organ in systemic sclerosis (SSc). We sought to determine the prevalence and impact of GIT symptoms on survival and patient-reported outcomes.
Methods: 907 consecutive patients from the Australian Scleroderma Cohort Study (ASCS) who had prospectively completed the University of California Los Angeles Scleroderma Clinical Trials Consortium Gastrointestinal Tract 2.0 questionnaire (UCLA GIT) between 2015 and 2021 were included. The association between UCLA GIT scores and physical function (SHAQ), QoL (SF-36), mood (PROMIS anxiety and depression domains), fatigue (FACIT-fatigue score) and employment was investigated using multivariable population-averaged panel models using Generalized Estimating Equations (GEE). Kaplan-Meier curves and multivariable Cox proportional hazard regression model were used to evaluate survival according to total UCLA GIT scores.
Results: GIT symptoms were reported in 87% of participants with 46-52% reporting moderate to very severe symptoms of reflux, distension, diarrhoea and constipation. Higher total UCLA GIT scores were associated with worse QoL, physical function, fatigue, anxiety and depression (p<0.001). In multivariable GEE analysis, moderate and severe to very severe total scores, reflux and distension scores were associated with worse physical function, QoL, fatigue, anxiety and depression compared to those with mild scores (p<0.05). Patients with severe total scores and diarrhoea scores were more likely to be unemployed compared to those with mild scores (p<0.05). UCLA GIT total scores were not independently associated with mortality in our cohort.
Conclusion: GIT manifestations are common in SSc and negatively impact QoL, physical function and employment but are not directly associated with increased mortality.
Objective: Among individuals with SLE who became pregnant, we explored the impact of medical readiness for pregnancy and personal readiness for pregnancy on the following aspects of maternal health: (1) provider-reported disease activity, (2) patient-perceived disease activity, (3) mood symptoms, (4) pregnancy-related health behaviors, and (5) pregnancy outcomes.
Methods: All study participants were enrolled in a prospective registry, met SLICC criteria for SLE, and had at least one pregnancy. Patient reported outcomes were collected at first rheumatology visit of pregnancy. "Medically ready" for pregnancy was defined as (1) <1g of proteinuria, (2) no rheumatic teratogens at conception, and (3) continuing pregnancy compatible SLE medications after conception. "Personally ready" was defined as planned pregnancy based on a London Measure of Unplanned Pregnancy (LMUP) ≥10. Multivariable logistic regression models estimated the association of pregnancy readiness with each outcome of interest.
Results: Among the 111 individuals enrolled, lack of medical readiness for pregnancy was associated with significantly higher rates of active disease and worse pregnancy outcomes; however, these patients did not perceive themselves as having higher disease activity. Lack of personal readiness for pregnancy was associated with significantly higher patient-perceived disease activity. While medical readiness did not impact depressive symptoms substantially, lack of personal readiness for pregnancy was associated with much higher maternal depressive symptoms.
Conclusion: To improve pregnancy outcomes among individuals with SLE, greater focus is needed on improving medical optimization before conception. For maternal mental health and quality of life, greater focus is needed on decreasing the incidence of unplanned pregnancy.
Objective: Environmental hazards and heightened neighborhood social vulnerability coexist and disproportionately affect minoritized populations. We investigated associations between adverse environmental burden concentrated in areas with high social vulnerability with care fragmentation (missed appointments, Emergency Department (ED) visits and hospitalizations) and social needs (e.g., food and housing insecurity) among individuals with rheumatic conditions.
Methods: We identified adults receiving care in a Massachusetts multihospital system with >2 rheumatic disease codes and complete street addresses. Geocoded addresses were linked to the CDC/ATSDR Social-Environmental Ranking (SER), which combines census tract social vulnerability variables (e.g., socioeconomic status) with environmental hazards (e.g., air and water pollution). Social needs were from self-reported surveys. Multilevel, multinomial regression models estimated associations between SER quartiles, care fragmentation, and social need burden, accounting for demographics and comorbidities.
Results: Among 16,856 individuals with rheumatic conditions, 70% were female, 6% were Black, 82% were White, and 7% resided in the highest combined social vulnerability and environmental burden (SER Quartile 4) areas. Among 7,083 with social needs data, 19% experienced >1 challenge. Individuals in SER Quartile 4 areas (vs. Quartile 1), had 2.02 (95% CI 1.67-2.46) times greater odds of >4 care fragmentation occurrences (vs. 0) and 2.37 (95% CI 1.73-3.25) times greater odds of >2 social needs (vs. 0).
Conclusions: Residence in areas of high combined adverse environmental burden and social vulnerability was associated with significantly greater odds of care fragmentation and social needs. Addressing structural factors and emerging environmental threats contributing to these adverse exposures is essential to reduce rheumatic disease care inequities.
Objectives: This study aims to systematically synthesize literature on prognostic factors of changes in either direction (i.e. worsening or improvement) in pain, physical functioning, and participation in patients with knee- and/or hip OA.
Methods: Studies included in two preceding reviews underwent full-text screening for inclusion in the current review. Additionally, an extensive literature search was conducted in five databases. Title/abstract screening was performed using an active learning program. Inclusion criteria comprised patients diagnosed with knee- and/or hip OA, with the dependent variable assessing pain, physical functioning, or participation. Potential associated prognostic factors were measured as independent variables. The methodological quality of studies was assessed with the Hayden criteria.
Results: Thirty one studies were included in this systematic review. In knee OA patients, pain worsening is associated with lower physical functioning (strong evidence) and with higher body mass index, ethnicity, and a higher comorbidity count (moderate evidence). Also in knee OA patients, pain improvement is associated with less pain at baseline (moderate evidence). In knee- and/or hip OA patients, worsening of physical functioning exhibited associations with higher body mass index, more pain, more hip pain, a higher comorbidity count, higher avoidance of activities (strong evidence), and ethnicity (moderate evidence). In knee OA patients, improvement in physical functioning showed an association with higher vitality (moderate evidence). Regarding the remaining prognostic factors there is weak, inconclusive, or inconsistent evidence for an association with the outcomes. In hip OA only weak evidence was found for three factors predicting a change in physical functioning.
Conclusion: This review encompasses prognostic factors associated with changes in either direction (i.e., worsening or improvement) in pain, physical functioning and participation.. The results are consistent with other reviews. Future research should place a stronger emphasis on hip OA patients and participation as an outcome.
Objective: There is limited data on researchers' attitudes and beliefs on returning and managing incidental research findings from whole body 18F-fluorodeoxyglucose-positron emission tomography/CT (FDG PET/CT) imaging.
Methods: Site principal investigators (PIs) who enrolled participants for the Treatments Against RA and Effect on FDG PET/CT (TARGET) trial were surveyed.
Results: Of the 28 TARGET site PIs eligible for the study, 18 consented to participate (response rate: 64%). Many site PIs returned incidental findings to participants (61%), and the most common finding that was returned were serious (but not life-threatening) and treatable (54.5%). More than half of the investigators believed that adequacy of clinical follow-up (58.8%) and legal liability if incidental findings are not disclosed (55.6%) were extremely important factors in returning incidental research findings from whole body FDG PET/CT. All investigators felt very obligated to return incidental research findings if scans reveal a treatable, high-risk medical condition. Most investigators felt very obligated to disclose incidental findings with important health implications (94.4%), for which proven preventive or therapeutic interventions exist (77.8%), that provide early detection of a health problem (72.2%), if participants ask for their incidental findings (72.2%), and if scans have established validity for a particular medical condition (61.1%).
Conclusion: While it is recommended that researchers report and manage incidental research findings, our data show differing views and uncertainties on what and how to return, and the extent of follow up needed to manage, incidental findings from whole body FDG PET/CT; this highlights the need for more specific and standardized guidance.
A critical unanswered question is what is causing the increase in the prevalence of autoimmunity and autoimmune diseases around the world. Given the rapidity of change, this is likely the result of major recent alterations in our exposures to environmental risk factors for these diseases. More evidence is becoming available that the evolution of autoimmune disease, years or even decades in the making, results from multiple exposures that alter susceptible genomes and immune systems over time. Exposures during sensitive phases in key developmental or hormonal periods may set the stage for the effects of later exposures. It is likely that synergistic and additive impacts of exposure mixtures result in chronic low-level inflammation. This inflammation may eventually pass thresholds that lead to immune system activation and autoimmunity, and, with further molecular and pathologic changes, the complete clinical syndrome emerges. Much work remains to be done to define the mechanisms and risk and protective factors for autoimmune conditions. However, evidence points to a variety of pollutants, xenobiotics, infections, occupational exposures, medications, smoking, psychosocial stressors, changes in diet, obesity, exercise, and sleep patterns, as well as climate change impacts of increased heat, storms, floods, wildfires, droughts, ultraviolet radiation, malnutrition, and changing infections, as possible contributors. Substantial investments in defining the role of causal factors, in whom and when their effects are most important, the necessary and sufficient gene-environment interactions, improved diagnostics and therapies, and preventative strategies are needed now to limit the many negative personal, societal, and financial impacts that will otherwise occur.
Objective: Physician global assessments (PhyGA) are variably applied in systemic sclerosis (SSc) clinical trials. The comparability of different PhyGA results is unknown. We sought to assess the comparability of results from three different PhyGA instruments simultaneously applied in the Australian Scleroderma Cohort Study (ASCS).
Methods: Using data from 1,965 ASCS participants, we assessed the correlation between results of three PhyGA assessments: (1) overall health; (2) activity; (3) damage. We evaluated the concordance of change in each PhyGA between study visits. Ordered logistic regression analysis was used to evaluate the clinical associations of each PhyGA.
Results: The absolute scores of each PhyGA were strongly correlated at individual study visits. Concordant change of the PhyGA scores occurred between 50% of study visits. Only patient-reported breathlessness was associated with all three PhyGA scores (overall health: OR 1.67, p<0.01; activity: OR 1.44, p<0.01; damage: OR 1.32, p<0.01). Change in physician-assessed activity scores was also associated with patient-reported worsening skin disease (OR 1.25, p=0.03) and faecal incontinence (OR 1.23, p=0.01), whereas damage scores were associated with respiratory disease (pulmonary arterial hypertension: OR 1.25, p=0.03; chronic obstructive pulmonary disease: OR 1.37, p=0.04) as well as skin scores (OR 1.02, p<0.01) and faecal incontinence (OR 1.21, p=0.02).
Conclusion: Physician global assessments of each of overall health, activity and damage are associated with different SSc features, and change in different PhyGA scores is discordant 50% of the time. Our findings suggest results of variably worded PhyGAs are not directly interchangeable and support the development of a standardised PhyGA.
Objectives: At Women & Infants Hospital in Providence, Rhode Island, the Specialty Care in Pregnancy clinic combines obstetric-medicine internists with rheumatologists to care for pregnant women with rheumatologic conditions. These clinics are scarce, with only three known similar clinics in the United States. This study aims to characterize the population cared for in this clinic, identify interventions, and analyze pregnancy outcomes for the mothers and newborns.
Methods: A five-year retrospective chart review was performed from January 1st, 2016, through December 31st, 2021.
Results: Of 81 patients, 62% had a clinically diagnosed rheumatic disorder. Of 87 patient visits, which included preconception, prenatal and postpartum encounters, 54% were on conventional synthetic disease modifying antirheumatic drugs and 17% were on biologic disease modifying antirheumatic drugs. New medications were started in 52% of patients. 52% of pregnancies resulted in live births with 2% resulting in miscarriages. Prematurity occurred in 19% of newborns, and 9% had intrauterine growth restriction.
Conclusion: Our study illustrates the benefits of multidisciplinary care in patients with rheumatologic disorders during their prenatal and perinatal periods. The expertise from both the obstetric-medicine internists and rheumatologists was critical in making complex decisions that weigh the benefits of therapy against potential risks for the fetus. Our multidisciplinary approach resulted in doubling of the number of patients on disease modifying therapy and increased prophylaxis with hydroxychloroquine and/or aspirin therapy as recommended by current guidelines. Additional multidisciplinary clinics of this type would help coordinate care between physicians that frequently treat these high-risk, unique patients and open the door for more research of this understudied population.
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