Clinical Outcomes of US Adults Hospitalized for COVID-19 and Influenza in the Respiratory Virus Hospitalization Surveillance Network, October 2021-September 2022.

Severe outcomes were common among adults hospitalized for COVID-19 or influenza, while the percentage of COVID-19 hospitalizations involving critical care decreased from October 2021 to September 2022. During the Omicron BA.5 period, intensive care unit admission frequency was similar for COVID-19 and influenza, although patients with COVID-19 had a higher frequency of in-hospital death.

Characteristics and Outcomes Among Adults Aged ≥60 Years Hospitalized with Laboratory-Confirmed Respiratory Syncytial Virus - RSV-NET, 12 States, July 2022-June 2023.

Respiratory syncytial virus (RSV) causes substantial morbidity and mortality in older adults. In May 2023, two RSV vaccines were approved for prevention of RSV lower respiratory tract disease in adults aged ≥60 years. In June 2023, CDC recommended RSV vaccination for adults aged ≥60 years, using shared clinical decision-making. Using data from the Respiratory Syncytial Virus-Associated Hospitalization Surveillance Network, a population-based hospitalization surveillance system operating in 12 states, this analysis examined characteristics (including age, underlying medical conditions, and clinical outcomes) of 3,218 adults aged ≥60 years who were hospitalized with laboratory-confirmed RSV infection during July 2022-June 2023. Among a random sample of 1,634 older adult patients with RSV-associated hospitalization, 54.1% were aged ≥75 years, and the most common underlying medical conditions were obesity, chronic obstructive pulmonary disease, congestive heart failure, and diabetes. Severe outcomes occurred in 18.5% (95% CI = 15.9%-21.2%) of hospitalized patients aged ≥60 years. Overall, 17.0% (95% CI = 14.5%-19.7%) of patients with RSV infection were admitted to an intensive care unit, 4.8% (95% CI = 3.5%-6.3%) required mechanical ventilation, and 4.7% (95% CI = 3.6%-6.1%) died; 17.2% (95% CI = 14.9%-19.8%) of all cases occurred in long-term care facility residents. These data highlight the importance of prioritizing those at highest risk for severe RSV disease and suggest that clinicians and patients consider age (particularly age ≥75 years), long-term care facility residence, and underlying medical conditions, including chronic obstructive pulmonary disease and congestive heart failure, in shared clinical decision-making when offering RSV vaccine to adults aged ≥60 years.

Characteristics and Outcomes Among Adults Aged ≥60 Years Hospitalized with Laboratory-Confirmed Respiratory Syncytial Virus - RSV-NET, 12 States, July 2022-June 2023.

Respiratory syncytial virus (RSV) causes substantial morbidity and mortality in older adults. In May 2023, two RSV vaccines were approved for prevention of RSV lower respiratory tract disease in adults aged ≥60 years. In June 2023, CDC recommended RSV vaccination for adults aged ≥60 years, using shared clinical decision-making. Using data from the Respiratory Syncytial Virus-Associated Hospitalization Surveillance Network, a population-based hospitalization surveillance system operating in 12 states, this analysis examined characteristics (including age, underlying medical conditions, and clinical outcomes) of 3,218 adults aged ≥60 years who were hospitalized with laboratory-confirmed RSV infection during July 2022-June 2023. Among a random sample of 1,634 older adult patients with RSV-associated hospitalization, 54.1% were aged ≥75 years, and the most common underlying medical conditions were obesity, chronic obstructive pulmonary disease, congestive heart failure, and diabetes. Severe outcomes occurred in 18.5% (95% CI = 15.9%-21.2%) of hospitalized patients aged ≥60 years. Overall, 17.0% (95% CI = 14.5%-19.7%) of patients with RSV infection were admitted to an intensive care unit, 4.8% (95% CI = 3.5%-6.3%) required mechanical ventilation, and 4.7% (95% CI = 3.6%-6.1%) died; 17.2% (95% CI = 14.9%-19.8%) of all cases occurred in long-term care facility residents. These data highlight the importance of prioritizing those at highest risk for severe RSV disease and suggest that clinicians and patients consider age (particularly age ≥75 years), long-term care facility residence, and underlying medical conditions, including chronic obstructive pulmonary disease and congestive heart failure, in shared clinical decision-making when offering RSV vaccine to adults aged ≥60 years.

Perspectives on Treatment Burden for Methotrexate and Tumor Necrosis Factor Inhibitors Among Patients With Psoriatic Arthritis and Rheumatoid Arthritis: A Qualitative Study.

OBJECTIVE: To describe patients' perspectives on the burden associated with methotrexate (MTX) or tumor necrosis factor inhibitor (TNFi) use in psoriatic arthritis (PsA) and rheumatoid arthritis (RA). METHODS: Between May 2019 and March 2020, patients receiving MTX and/or a TNFi for either PsA or RA were randomly sampled from the FORWARD data bank and were invited to participate in semistructured telephone interviews. Interviews explored patients' perspectives on treatment burden and experiences with MTX and TNFi and were conducted until data saturation was achieved. Interviews were recorded, transcribed, and analyzed using a grounded theory approach and NVivo v12.0 software. RESULTS: Overall, 25 patients with PsA and 24 patients with RA participated in the interviews. Participants were predominantly women (mean age: 67 years). Nine major themes related to treatment burden were explored, including treatment side effects and their management, psychological burden, effect on daily functioning and work participation, challenges with accessing and administering therapies, financial difficulties or economic impact, and family planning or breastfeeding. Patients receiving MTX mostly reported side effects as the major burden, while cost and concerns with accessing and administering medication were major challenges reported by TNFi users. Treatment discontinuation due to lack of effectiveness was high for PsA, while discontinuation due to medication cost was high for RA. CONCLUSION: Patients experience a wide range of burden associated with treatments used for PsA and RA. Health care practitioners should consider these challenges when prescribing therapy and strive toward reducing this burden by understanding patients' concerns and needs and involving them in decision making.

Rheumatic disease patient decision-making about COVID-19 vaccination: a qualitative analysis.

BACKGROUND: Although patients with rheumatic and musculoskeletal diseases (RMDs) are at increased risk for adverse outcomes of COVID-19 illness compared to healthy controls, they also have lower rates of willingness to be vaccinated. Previous research has identified reasons for vaccine hesitancy among patients with RMDs (such as concerns about side effects and flares), but little is known about what these reasons mean in the context of patients' lives, or how vaccine decision making is experienced from a patient perspective. Our objective was to describe decision-making about COVID-19 vaccination among RMD patients. METHODS: Participants in a RMD registry were invited to complete monthly online surveys regarding COVID-19 vaccination from March-June 2021. We qualitatively analyzed comments from two open-ended survey questions reporting general experiences with vaccination and side effects. Comments were coded for attitudes towards COVID-19 vaccination, vaccine access, rheumatologic medication management around vaccination, and vaccine side effects. Themes were identified for the process and context of COVID-19 vaccine decisions, patient motivations for receiving or avoiding vaccination, and consistency of peri-vaccine medication management with current ACR guidelines. RESULTS: We analyzed 710 comments from 537 respondents. Commenting respondents had a mean age of 64 years, were 87% female, 94% white, and 93% received/intended to receive ≥ 1 dose of a COVID-19 vaccine. Desire for protection and a return to normal routines motivated some commenters to get vaccinated, while concerns about vaccine side effects motivated others to delay or avoid vaccination. Several commenters reported disease flares following vaccination. Some commenters did not consult their providers about vaccination and failed to withhold immunomodulatory medications during vaccination, while others withheld medications more conservatively than recommended by current ACR guidelines, either on their own or directed by their provider. CONCLUSIONS: While most commenters were vaccine-accepting, challenges to COVID-19 vaccine uptake in the RMD population may include fears of side effects, including worsened RMD symptoms, and perceptions that vaccination is unnecessary. Addressing these concerns and beliefs may be critical for promoting vaccination in this population.

Side Effects of Methotrexate and Tumor Necrosis Factor Inhibitors: Differences in Tolerability Among Patients With Psoriatic Arthritis and Rheumatoid Arthritis.

OBJECTIVE: To examine the prevalence of side effects with methotrexate (MTX) and tumor necrosis factor inhibitors (TNFi) among patients with psoriatic arthritis (PsA) and rheumatoid arthritis (RA). METHODS: This retrospective analysis, conducted between January 2000 and January 2019, used data from the FORWARD databank. Adult patients enrolled in the registry with self-reported and physician-confirmed diagnosis of PsA or RA were included if they had completed at least one questionnaire before initiating and within 12 months following initiation of MTX or a TNFi. The primary outcome was to examine the prevalence of side effects with MTX and TNFi within the year following treatment initiation. Multivariate logistic regression analysis was performed to examine the association between PsA and RA and the reporting of their side effects. RESULTS: Overall, 116 patients with PsA and 4247 patients with RA newly initiated MTX, and 124 patients with PsA and 4361 patients with RA newly initiated a TNFi. Patients with PsA were more likely to report MTX-related side effects than those with RA (44.8% vs. 29.4%), whereas similar proportions of patients with PsA and RA reported TNFi-related side effects within the first year (24.2% and 22.8%, respectively). Additionally, patients with PsA initiating MTX were more likely to report nausea, vomiting, abdominal pain, depression, and tinnitus than patients with RA initiating MTX or those with PsA or RA initiating a TNFi. CONCLUSION: Patients with PsA reported more side effects than patients with RA, and this difference was more pronounced in those receiving MTX versus TNFi.

Impact of assessing patient-reported outcomes with mobile apps on patient-provider interaction.

OBJECTIVE: To explore the effect of apps measuring patient-reported outcomes (PROs) on patient-provider interaction in the rheumatic diseases in an observational setting. METHODS: Patients in the Swiss Clinical Quality Management in Rheumatic Diseases Registry were offered mobile apps (iDialog and COmPASS) to track disease status between rheumatology visits using validated PROs (Rheumatoid Arthritis Disease Activity Index-5 score, Bath Ankylosing Spondylitis Disease Activity Index score, Routine Assessment of Patient Index Data-3 score and Visual Analogue Scale score for pain, disease activity and skin symptoms). We assessed two aspects of patient-provider interaction: shared decision making (SDM) and physician awareness of disease fluctuations. We used logistic regressions to compare outcomes among patients who (1) used an app and discussed app data with their physician (app+discussion group), (2) used an app without discussing the data (app-only group) or (3) did not use any app (non-app users). RESULTS: 2111 patients were analysed, including 1799 non-app users, 150 app-only users and 162 app+discussion users (43% male; with 902 patients with rheumatoid arthritis, 766 patients with axial spondyloarthritis and 443 patients with psoriatic arthritis). App users were younger than non-app users (mean age of 47 vs 51 years, p<0.001). Compared with non-app users, the app+discussion group rated their rheumatologist more highly in SDM (OR 1.7, 95% CI 1.1 to 2.4) and physician awareness of disease fluctuations (OR 2.0, 95% CI 1.3 to 3.1). This improvement was absent in the app-only group. CONCLUSION: App users who discussed app data with their rheumatologist reported more favourably on patient-provider interactions than app users who did not and non-app users. Apps measuring PROs may contribute little to patient-provider interactions without integration of app data into care processes.

Acceptability and Content Validity of Patient-Reported Outcome Measures Considered From the Perspective of Patients With Rheumatoid Arthritis.

OBJECTIVE: To consider the acceptability and content validity of patient-reported outcome measures commonly used in rheumatoid arthritis by describing patients' perceptions of patient-reported outcome measures and comparing patients' responses on patient-reported outcome measures with their verbal accounts of disease impacts. METHODS: We used a sequential mixed methods approach, combining analysis of interviews and data from patient-reported outcome measures (from the Health Assessment Questionnaire, the Functional Assessment of Chronic Illness Therapy-Fatigue subscale, the EuroQol 5-domain instrument, the Short Form 36 health survey, and a visual analog scale [VAS] for pain, fatigue, sleep, and patient global assessment of disease activity). Qualitative analysis of patients' perceptions of patient-reported outcome measures informed a subsequent comparison between data from patient-reported outcome measures and verbal accounts of pain, fatigue, sleep, and functional limitations to assess the effectiveness of patient-reported outcome measures in communicating disease impact. RESULTS: The study included 18 patients. Although a few patients offered positive comments about patient-reported outcome measures, most doubted that patient-reported outcome measures could accurately convey their experience of symptoms and functional limitations. Patients discussed the ease of responding to questions, capturing and conveying symptoms, and concerns about the underreporting of symptoms and interpretation of responses. Compared with verbal accounts, patient-reported outcome measures often did not convey the personal significance of limitations; however, patient-reported outcome measures captured limitations that patients omitted or described with insufficient detail during interviews. Although verbal accounts of pain could be categorized into 3 levels of severity (pain without interference in activities, pain is not the worst ever experienced but interferes with activities, and pain is omnipresent), the pain VAS was more effective at conveying finer gradations in pain severity. CONCLUSION: Although patients may feel that patient-reported outcome measures have certain shortcomings, patient-reported outcome measures also have advantages relative to verbal discussion for communicating symptoms and disease impact.

Experiences of Patients With Rheumatic Diseases in the United States During Early Days of the COVID-19 Pandemic.

OBJECTIVE: Patients with rheumatic diseases such as rheumatoid arthritis (RA) and lupus have increased risk of infection and are treated with medications that may increase this risk yet are also hypothesized to help treat COVID-19. We set out to understand how the COVID-19 pandemic has impacted the lives of these patients in the United States. METHODS: Participants in a US-wide longitudinal observational registry responded to a supplemental COVID-19 questionnaire by e-mail on March 25, 2020, about their symptoms, COVID-19 testing, health care changes, and related experiences during the prior 2 weeks. Analysis compared responses by diagnosis, disease activity, and new onset of symptoms. Qualitative analysis was conducted on optional free-text comment fields. RESULTS: Of the 7061 participants invited to participate, 530 responded, with RA as the most frequent diagnosis (61%). Eleven participants met COVID-19 screening criteria, of whom two sought testing unsuccessfully. Six others sought testing, three of whom were successful, and all test results were negative. Not quite half of participants (42%) reported a change to their care in the prior 2 weeks. Qualitative analysis revealed four key themes: emotions in response to the pandemic, perceptions of risks from immunosuppressive medications, protective measures to reduce risk of COVID-19 infection, and disruptions in accessing rheumatic disease medications, including hydroxychloroquine. CONCLUSION: After 2 weeks, many participants with rheumatic diseases already had important changes to their health care, with many altering medications without professional consultation or because of hydroxychloroquine shortage. As evidence accumulates on the effectiveness of potential COVID-19 treatments, effort is needed to safeguard access to established treatments for rheumatic diseases.

Development of Resilience Among Rheumatoid Arthritis Patients: A Qualitative Study.

OBJECTIVE: Resilience, the ability to recover from and adapt successfully to stressful situations, is a valuable resource for patients who live with chronic conditions. This qualitative study examines the development of resilience among rheumatoid arthritis (RA) patients. We aimed to describe the resilience development process and to describe strategies used by patients to cultivate resilience. METHODS: Our approach combined ethnographic data collection and narrative analysis methods. Semistructured interviews were conducted with adult RA patients in the US. Interviewees were asked to discuss their experiences with diagnosis, living with RA, coping with challenges, treatment, and health care providers. The interviews were audiorecorded, transcribed, and analyzed to describe the stages of resilience development and to identify patients' strategies for building/maintaining resilience. RESULTS: Eighteen patients were interviewed, ages 27-80 years and with RA duration of 5-41 years. Patient responses to challenging situations were grouped into 3 stages: 1) lacking capacity to handle the situation, 2) struggling but growing in capacity to handle the situation, and 3) attaining mastery. Patients used 10 strategies to cultivate resilience: perseverance, exchanging social support, pursuing valued activities, flexibility, positive reframing, acceptance, humor, avoiding threatening thoughts, equanimity, and maintaining a sense of control. CONCLUSION: RA patients acquire resilience in a dynamic process of learning in response to new challenges. Patients use a combination of behavioral and emotion management strategies to cultivate resilience. Awareness of these strategies may benefit patients, health care providers, and researchers developing behavioral interventions and social support programs in the context of RA and other chronic diseases.

The Patients Save Lives Program to Facilitate Organ Donor Designation in Primary Care Offices.

BACKGROUND: There are about 120 000 people on the US waiting list for a solid organ transplant; nearly 22 people die every day who could be helped through organ donation. Joining a donor registry and informing one's family of one's preferences increases recovery rates and can avoid misunderstandings during an emotionally difficult time. Although the vast majority of people support organ donation, only about half of adults have joined a state donor registry. Methods. A 3-group design was used. Primary care physician offices were randomly assigned to either web-based training, in-person training, or a control condition. The control condition consisted of a poster and traditional brochure and donor form placed in the waiting room. In the 2 intervention groups, the Patients Save Lives form was distributed during the check-in process in addition to the poster. RESULTS: A total of 1521 physicians and office staff at 81 clinic sites (48 in-person and 33 web-based) received the training; there were 33 control locations. A total of 21 189 patients were exposed to the intervention over a 6-month period; 761 (8.1%) of 9428 people who were not already registered completed the designation form to be organ donors. There were no donor designations in the control group locations. CONCLUSION: Organ donor designation can be incorporated into the office check-in procedure without disrupting the workflow or burdening clinicians. The program is available online and can be sustained inexpensively with cooperation between primary care offices and regional Organ Procurement Organizations.

Outcome Measures in Rheumatology - Interventions for medication Adherence (OMERACT-Adherence) Core Domain Set for Trials of Interventions for Medication Adherence in Rheumatology: 5 Phase Study Protocol.

BACKGROUND: Over the last 20 years, there have been marked improvements in the availability of effective medications for rheumatic conditions such as gout, osteoporosis and rheumatoid arthritis (RA), which have led to a reduction in disease flares and the risk of re-fracture in osteoporosis, and the slowing of disease progression in RA. However, medication adherence remains suboptimal, as treatment regimens can be complex and difficult to continue long term. Many trials have been conducted to improve adherence to medication. Core domains, which are the outcomes of most relevance to patients and clinicians, are a pivotal component of any trial. These core domains should be measured consistently, so that all relevant trials can be combined in systematic reviews and meta-analyses to reach conclusions that are more valid. Failure to do this severely limits the potential for trial-based evidence to inform decisions on how to support medication adherence. The Outcome Measures in Rheumatology (OMERACT) - Interventions for Medication Adherence study by the OMERACT-Adherence Group aims to develop a core domain set for interventions that aim to support medication adherence in rheumatology. METHODS/DESIGN: This OMERACT-Adherence study has five phases: (1) a systematic review to identify outcome domains that have been reported in interventions focused on supporting medication adherence in rheumatology; (2) semi-structured stakeholder interviews with patients and caregivers to determine their views on the core domains; (3) focus groups using the nominal group technique with patients and caregivers to identify and rank domains that are relevant to them, including the reasons for their choices; (4) an international three-round modified Delphi survey involving patients with diverse rheumatic conditions, caregivers, health professionals, researchers and other stakeholders to develop a preliminary core domain set; and (5) a stakeholder workshop with OMERACT members to review, vote on and reach a consensus on the core domain set for interventions to support medication adherence in rheumatology. DISCUSSION: Establishing a core domain set to be reported in all intervention studies undertaken to support patients with medication adherence will enhance the relevance and the impact of these results and improve the lives of people with rheumatic conditions.

Rheumatoid Arthritis Patients' Motivations for Accepting or Resisting Disease-Modifying Antirheumatic Drug Treatment Regimens.

OBJECTIVE: Patient refusal of and nonadherence to treatment with disease-modifying antirheumatic drugs (DMARDs) can adversely affect disease outcomes in rheumatoid arthritis (RA). This qualitative study describes how RA patients' feelings in response to experiences and information affected their decisions to accept (agree to adopt, initiate, and implement) or resist (refuse, avoid, and discontinue) DMARD treatment regimens. METHODS: A total of 48 RA patients were interviewed about their experiences making decisions about DMARDs. The interviews were transcribed, coded, and analyzed for themes related to their internal motivations for accepting or resisting treatment regimens, using a narrative analysis approach. RESULTS: In addition to feelings about the necessity and dangers of medications, patients' feelings towards their identity as an ill person, the act of taking medication, and the decision process itself were important drivers of patient's decisions. For patients' motivations to accept treatment regimens, 2 themes emerged: a desire to return to a normal life, and fear of future disability due to RA. For motivations to resist treatment regimens, 5 themes emerged: fear of medications, maintaining control over health, denial of sick identity, disappointment with treatment, and feeling overwhelmed by the cognitive burden of deciding. CONCLUSION: Feelings in response to experiences and information played a major role in how patients weighed the benefits and costs of treatment options, suggesting that addressing patients' feelings may be important when rheumatologists counsel about therapeutic options. Further research is needed to learn how best to address patients' feelings throughout the treatment decision-making process.

Timing and Impact of Decisions to Adjust Disease-Modifying Antirheumatic Drug Therapy for Rheumatoid Arthritis Patients With Active Disease.

OBJECTIVE: Guidelines recommend that rheumatoid arthritis (RA) patients with moderate-to-high disease activity (MHDAS) adjust disease-modifying antirheumatic drug (DMARD) therapy at least every 3 months until reaching low disease activity or remission (LDAS). We examined how quickly RA patients with MHDAS adjust DMARD therapy in clinical practice, and whether those who adjust DMARDs within 90 days in response to MHDAS reach LDAS sooner. METHODS: We identified RA patients with MHDAS in the University of Pittsburgh Rheumatoid Arthritis Comparative Effectiveness Research registry, and conducted a competing risks regression on time to DMARD therapy adjustment and a Cox regression on time to LDAS. RESULTS: We identified 538 eligible subjects with 943.5 patient-years of followup. Sixty percent of patients with persistent MHDAS adjusted DMARDs within 90 days. Among all subjects, median times to DMARD adjustment and LDAS were 154 (interquartile range [IQR] 1-706) days and 301 (IQR 140-706) days, respectively. Being elderly (subdistribution hazard ratio [SHR] 0.61, P = 0.02), lower baseline disease activity (SHR 0.72, P < 0.01), longer duration of RA (SHR 0.98, P < 0.01), and biologic use (SHR 0.71, P < 0.01) were significantly associated with longer times to therapy adjustment. African American race (hazard ratio [HR] 0.63, P = 0.01), higher baseline disease activity (HR 0.75, P < 0.01), and not adjusting DMARD therapy within 90 days (HR 0.76, P = 0.01) were associated with longer times to LDAS. CONCLUSION: Adjusting DMARDs within 90 days was associated with shorter times to LDAS, but many patients with persistent MHDAS waited >90 days to adjust DMARDs. Interventions are needed to address the timeliness of DMARD adjustments for RA patients with MHDAS.