Patient experiences and strategies for coping with SLE: A qualitative study.

OBJECTIVE: This study explored challenges that patients with systemic lupus erythematosus (SLE) and childhood-onset SLE (cSLE) face to identify modifiable influences and coping strategies in patient experiences. METHODS: Participants were recruited from two academic medical centers through a Lupus Registry of individuals ≥18 years old and ≥4 1997 ACR classification criteria for SLE and a centralized data repository of cSLE patients, and participated in three focus groups. Transcripts were coded thematically and adjudicated by two independent reviewers. RESULTS: Thirteen adults, 7 (54%) with cSLE, participated in focus groups. Themes were categorized into two domains: (1) challenges with SLE diagnosis and management; and (2) patient coping strategies and modifiable factors of the SLE experience. Participants identified five primary challenges: diagnostic odyssey, public versus private face of SLE, SLE-related stresses, medication adherence, and transitioning from pediatric to adult care. Coping strategies and modifiable factors included social support, open communication about SLE, and strong patient-provider relationships. Several participants highlighted positive lessons learned through their experiences with SLE, including empathy, resilience, and self-care skills. CONCLUSIONS: Patients with cSLE and SLE identified common challenges, modifying influences and coping strategies based on personal experiences. A strong patient-provider relationship and trust in the medical team emerged as key modifiable factors. Deriving optimism from experiences with SLE was unique to several patients diagnosed as children or young adults. Leveraging factors that improved the participants' experiences living with SLE may be used in future studies to address vulnerabilities in care.

A Qualitative Study of Factors Facilitating Clinical Nurse Engagement in Emergency Department Catheter-Associated Urinary Tract Infection Prevention.

OBJECTIVE: The aim of this study was to explore the actions of nurse leaders that facilitated clinical nurses' active involvement in emergency department (ED) catheter-associated urinary tract infection (CAUTI) prevention programs. BACKGROUND: Hospitals face increasing financial pressures to reduce CAUTI. Urinary catheters, often inserted in the ED, expose patients to CAUTI risk. Nurses are the principal champions of ED CAUTI prevention programs. METHODS: This was a qualitative analysis from a multisite, comparative case study project. A total of 52 interviews and 9 focus groups were analyzed across 6 enrolled EDs. Using a conventional content analysis, members of the research team coded data and developed site summaries to describe themes that had emerged across transcripts. Subsequently, all codes and site summaries were reviewed to identify the actions of nurse leaders that facilitated clinical nurses' engagement in CAUTI prevention efforts. RESULTS: Nurse leaders were the principal champions of CAUTI prevention programs and successfully engaged clinical nurses in CAUTI prevention efforts by (1) reframing urinary catheters as a source of potential patient harm; (2) empowering clinical nurses to identify and address CAUTI improvement opportunities; (3) fostering a culture of teamwork, which facilitated interdisciplinary communication around urinary catheter appropriateness and alternatives; and (4) holding clinical nurses accountable for CAUTI process and outcome measures. CONCLUSIONS: The prevention of CAUTI is an important opportunity for nurse leaders to engage clinical nurses in meaningful improvement efforts. Clinical nurses are best positioned to examine urinary catheter insertion workflow and to suggest improvements in avoiding use and improving placement and maintenance. To engage clinical nurses in CAUTI prevention, nurse leaders should focus on how urinary catheters expose patients to potential harm, involve nurses in designing and implementing practice changes, and provide local data to show the impact of nursing practices on patient outcomes.

Coronary Microvascular Dysfunction in Systemic Lupus Erythematosus.

Background Systemic lupus erythematosus (SLE) is a systemic autoimmune inflammatory disorder associated with premature atherosclerosis and increased cardiovascular risk. Systemic inflammation is an emerging risk factor for coronary microvascular dysfunction (CMD). We aimed to test whether CMD, defined as abnormal myocardial flow reserve (MFR) by positron emission tomography-computed tomography, would be independently associated with SLE after adjusting for nonobstructive atherosclerotic burden and common cardiovascular risk factors. Methods and Results Consecutive patients with SLE who underwent symptom-prompted stress cardiac positron emission tomography-computed tomography were included (n=42). Obstructive coronary artery disease and systolic dysfunction were excluded. MFR was quantified by positron emission tomography-computed tomography, and CMD was defined as MFR <2. We frequency matched patients who did not have SLE and had symptom-prompted positron emission tomography studies on age, sex, and key cardiovascular risk factors (n=69). The attenuation correction computed tomography scans were reviewed for qualitative assessment of coronary artery calcium. Patients with SLE had a more severe reduction in global MFR compared with controls and a higher prevalence of CMD, despite a similar degree of nonobstructive atherosclerotic burden (1.91±0.5 versus 2.4±0.7, respectively, P<0.0001; CMD, 57.1% versus 33.3%, respectively, P=0.017). Conclusions We demonstrated that patients with SLE with cardiac symptoms without obstructive coronary artery disease have a high prevalence of coronary vasomotor abnormalities. In comparison with symptomatic matched controls, patients with SLE have a more severe reduction in MFR that is not accounted for by common cardiovascular factors or atherosclerotic burden.

Using Critical Race Theory to Understand Trial Participation Among Black Individuals With Systemic Lupus Erythematosus: A Qualitative Study of Patients and Caregivers.

OBJECTIVE: Black patients with systemic lupus erythematous (SLE) experience greater disease incidence and severity than White patients, and yet they are underrepresented in SLE clinical trials. We applied Critical Race Theory to qualitatively explore the influence of racism on the underrepresentation of Black patients in SLE clinical trials and to develop a framework for future intervention. METHODS: We conducted focus group sessions in Chicago and Boston with Black adults (ages ≥18 years) with SLE and their caregivers. We queried the participants about their knowledge regarding clinical trials, factors that might motivate or hinder trial participation, and how race and experiences of racism might impact clinical trial participation. Focus group responses were transcribed verbatim and analyzed thematically. RESULTS: We held 4 focus groups (n = 31 participants); 20 participants had SLE, and 11 were caregivers. All participants were Black, 90% were women, and the mean age was 54 years. Qualitative analyses revealed several themes that negatively impact trial participation, including mistrust related to racism, concerns about assignment to placebo groups, strict study exclusion criteria, and SLE-related concerns. Factors that motivated trial participation included recommendations from physicians and reputable institutions, a desire to help the greater good, and culturally sensitive marketing of trials. CONCLUSION: Actions to improve clinical trial participation among Black individuals should focus on reframing how trial information is presented and disseminated and on reevaluating barriers that may restrict trial participation. Additionally, researchers must acknowledge and respond to the presence of racial bias in health care. Community-academic partnerships may help build trust and reduce fears of mistreatment among Black individuals with SLE.

Facilitators and Barriers to Reducing Emergency Department Admissions for Chest Pain: A Qualitative Study.

BACKGROUND: Chest pain of possible cardiac etiology is a leading reason for emergency department (ED) visits and hospitalizations nationwide. Evidence suggests outpatient management is safe and effective for low-risk patients; however, ED admission rates for chest pain vary widely. To identify barriers and facilitators to outpatient management after ED visits, we performed a multicenter qualitative study of key stakeholders. METHODS AND RESULTS: We identified Massachusetts hospitals with below-average admission rates for adult ED chest pain visits from 2010 to 2011. We performed a qualitative case study of 27 stakeholders across 4 hospitals to identify barriers and facilitators to outpatient management. Clinicians cited ability to coordinate follow-up care, including stress testing and cardiology consultation, as key facilitators of ED discharge. When these services are unavailable, or inconsistently available, they present a barrier to outpatient management. Clinicians identified pressure to maintain throughput and the lack of observation units as barriers to ED discharge. At 3 of 4 hospitals without observation units, clinicians did not use clinical protocols to guide the admission decision. At the site with a dedicated ED observation unit, low ED admission rates were attributed to clinician adherence to clinical protocols. CONCLUSIONS: In conclusion, most participants have not adopted protocols focused on reducing variation in ED chest pain admissions. Robust systems to ensure follow-up care after ED visits may reduce admission rates by mitigating the perceived risk of discharging ED patients with chest pain. Greater use of observation protocols may promote adoption of clinical guidelines and reduce admission rates.

Developing and Refining New Candidate Criteria for Systemic Lupus Erythematosus Classification: An International Collaboration.

OBJECTIVE: To define candidate criteria within multiphase development of systemic lupus erythematosus (SLE) classification criteria, jointly supported by the American College of Rheumatology and the European League Against Rheumatism. Prior steps included item generation and reduction by Delphi exercise, further narrowed to 21 items in a nominal group technique exercise. Our objectives were to apply an evidence-based approach to the 21 candidate criteria, and to develop hierarchical organization of criteria within domains. METHODS: A literature review identified the sensitivity and specificity of the 21 candidate criteria. Data on the performance of antinuclear antibody (ANA) as an entry criterion and operating characteristics of the candidate criteria in early SLE patients were evaluated. Candidate criteria were hierarchically organized into clinical and immunologic domains, and definitions were refined in an iterative process. RESULTS: Based on the data, consensus was reached to use a positive ANA of ≥1:80 titer (HEp-2 cells immunofluorescence) as an entry criterion and to have 7 clinical and 3 immunologic domains, with hierarchical organization of criteria within domains. Definitions of the candidate criteria were specified. CONCLUSION: Using a data-driven process, consensus was reached on new, refined criteria definitions and organization based on operating characteristics. This work will be followed by a multicriteria decision analysis exercise to weight criteria and to identify a threshold score for classification on a continuous probability scale.

Emergency Department Catheter-Associated Urinary Tract Infection Prevention: Multisite Qualitative Study of Perceived Risks and Implemented Strategies.

BACKGROUND: Existing knowledge of emergency department (ED) catheter-associated urinary tract infection (CAUTI) prevention is limited. We aimed to describe the motivations, perceived risks for CAUTI acquisition, and strategies used to address CAUTI risk among EDs that had existing CAUTI prevention programs. METHODS: In this qualitative comparative case study, we enrolled early-adopting EDs, that is, those using criteria for urinary catheter placement and tracking the frequency of catheters placed in the ED. At 6 diverse facilities, we conducted 52 semistructured interviews and 9 focus groups with hospital and ED participants. RESULTS: All ED CAUTI programs originated from a hospitalwide focus on CAUTI prevention. Staff were motivated to address CAUTI because they believed program compliance improved patient care. ED CAUTI prevention was perceived to differ from CAUTI prevention in the inpatient setting. To identify areas of ED CAUTI prevention focus, programs examined ED workflow and identified 4 CAUTI risks: (1) inappropriate reasons for urinary catheter placement; (2) physicians' limited involvement in placement decisions; (3) patterns of urinary catheter overuse; and (4) poor insertion technique. Programs redesigned workflow to address risks by (1) requiring staff to specify the medical reason for catheter at the point of order entry and placement; (2) making physicians responsible for determining catheter use; (3) using catheter alternatives to address patterns of overuse; and (4) modifying urinary catheter insertion practices to ensure proper placement. CONCLUSIONS: Early-adopting EDs redesigned workflow to minimize catheter use and ensure proper insertion technique. Assessment of ED workflow is necessary to identify and modify local practices that may increase CAUTI risk.