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.
Summary The likelihood of finding evidence of inflammation in 551 tracheal washes collected endoscopically from 278 Thoroughbred racehorses increased with the number of bacterial colony forming units (cfu) per ml of wash (P<0.00l). The aerobic bacteria Streptococcus zooepidemicus, Pasteurella/Actinobacillus‐like species and Streptococcus pneumoniae were significantly associated with lower airway inflammation whereas coagulase‐negative Staphylococcus spp., α‐haemolytic Streptococcus spp., Acinetobacter spp., Bacillus spp., Escherichia coli, Pseudomonas aeruginosa, non‐haemolytic Streptococcus spp. and Enterobacteriaceae were not; Bordetella bronchiseptica was not isolated. Lower airway inflammation was particularly associated with bacteria in horses ≤3 years of age. S. zooepidemicus, S. pneumoniae and Pasteurella/Actinobacillus‐like species were isolated from 167 of 551 washes, either alone or in combination.
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.
BackgroundOver 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/designThis 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.DiscussionEstablishing 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.Electronic supplementary materialThe online version of this article (10.1186/s13063-018-2565-z) contains supplementary material, which is available to authorized users.
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.
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