OBJECTIVE:This study explores the experiences and perceptions of people living with amyotrophic lateral sclerosis (pALS), their caregivers, and healthcare providers regarding participation in clinical trials. The study tested the hypothesis, based on existing literature, that geographic distance from multidisciplinary ALS clinics is the primary barrier to awareness and participation in clinical trials. METHODS:A road trip was conducted to engage individuals, particularly those residing more than 90 miles from specialized clinics. Qualitative and semi-quantitative methods were used to collect data from in-person interviews conducted with pALS, their caregivers, and healthcare providers in urban (high population density), suburban (residential areas on the outskirts of urban centers), and rural (sparsely populated) settings across the East Coast of the US. Thematic analysis was employed to interpret the data. RESULTS:Based on the interviews, a trusted, supportive, and knowledgeable medical team knowledgeable about ALS research emerged as a critical factor influencing patient participation decisions. Geographic distance alone did not meaningfully impact research interest or awareness. Healthcare providers faced challenges, including time constraints and limited access to updated information about studies, which hindered their ability to promote participation. Healthcare providers cited informal partnerships with advocacy organizations and research centers as crucial for facilitating research participation. CONCLUSIONS:Tailored communication strategies that leverage established relationships between pALS and their trusted healthcare providers may enhance research participation. As decentralized research models evolve, improving trial education and access and fostering knowledge and trust could significantly boost enrollment in ALS clinical research.

Importance:Semaglutide, a glucagonlike peptide-1 receptor agonist (GLP-1RA), has recently been implicated in cases of nonarteritic anterior ischemic optic neuropathy (NAION), raising safety concerns in the treatment of type 2 diabetes (T2D). Objective:To investigate the potential association between semaglutide and NAION in the Observational Health Data Sciences and Informatics (OHDSI) network. Design, Setting, and Participants:This was a retrospective study across 14 databases (6 administrative claims and 8 electronic health records). Included were adults with T2D taking semaglutide, other GLP-1RA (dulaglutide, exenatide), or non-GLP-1RA medications (empagliflozin, sitagliptin, glipizide) from December 1, 2017, to December 31, 2023. The incidence proportion and rate of NAION were calculated. Association between semaglutide and NAION was assessed using 2 approaches: an active-comparator cohort design comparing new users of semaglutide with those taking other GLP-1RAs and non-GLP-1RA drugs, and a self-controlled case-series (SCCS) analysis to compare individuals' risks during exposure and nonexposure periods for each drug. The cohort design used propensity score-adjusted Cox proportional hazards models to estimate hazard ratios (HRs). The SCCS used conditional Poisson regression models to estimate incidence rate ratios (IRRs). Network-wide HR and IRR estimates were generated using a random-effects meta-analysis model. Exposures:GLP-1RA and non-GLP-1RAs. Main Outcomes and Measures:NAION under 2 alternative definitions based on diagnosis codes: one more inclusive and sensitive, the other more restrictive and specific. Results:The study included 37.1 million individuals with T2D, including 810 390 new semaglutide users. Of the 43 620 new users of semaglutide in the Optum's deidentified Clinformatics Data Mart Database, 24 473 (56%) were aged 50 to 69 years, and 26 699 (61%) were female. The incidence rate of NAION was 14.5 per 100 000 person-years among semaglutide users. The HR for NAION among new users of semaglutide was not different compared with that of the non-GLP-1RAs using the sensitive NAION definition-empagliflozin (HR, 1.44; 95% CI, 0.78-2.68; P = .12), sitagliptin (HR, 1.30; 95% CI, 0.56-3.01; P = .27), and glipizide (HR, 1.23; 95% CI, 0.66-2.28; P = .25). The risk was higher only compared with patients taking empagliflozin (HR, 2.27; 95% CI, 1.16-4.46; P = .02) using the specific definition. SCCS analysis of semaglutide exposure showed an increased risk of NAION (meta-analysis IRR, 1.32; 95% CI, 1.14-1.54; P < .001). Conclusions and Relevance:Results of this study suggest a modest increase in the risk of NAION among individuals with T2D associated with semaglutide use, smaller than that previously reported, and warranting further investigation into the clinical implications of this association.

BACKGROUND: Leigh syndrome is a rare, progressive neurometabolic disorder caused by pathogenic variants in over 110 mitochondrial or nuclear genes. Its clinical and genetic heterogeneity creates challenges for diagnosis, care, and research. Cure Mito Foundation, a parent-led nonprofit established in 2018 to develop a gene therapy for SURF1-related Leigh syndrome, has since evolved into a global organization supporting individuals and families worldwide affected by all forms of Leigh syndrome. METHODS: This article describes the multifaceted efforts of Cure Mito Foundation to accelerate research and support for Leigh syndrome through family-led engagement and collaborative scientific partnerships. Strategies include funding the development of diverse disease models, gene therapies, drug repurposing pipelines, and a global patient registry. Emphasis is placed on co-production with affected families, sharing of biospecimens and data, and alignment with regulatory and research standards. RESULTS: The Leigh Syndrome Global Patient Registry comprises over 400 participants from 48 countries, with data made available to qualified researchers, and results shared regularly with the patient community to promote transparency and trust. Notable research accomplishments of Cure Mito include facilitating the development of multiple gene therapy candidates, patient-derived organoids and animal models, and repurposed drugs now entering early-phase trials. Cure Mito also played a key role in the launch of the Mitochondrial and Inherited Metabolic Disease Taskforce, led by the Critical Path Institute (C-Path), to integrate registry and clinical data into the Rare Disease Cures Accelerator platform. Additional efforts include community-developed educational tools, international awareness campaigns, and support programs tailored to the unique needs of Leigh syndrome families. CONCLUSIONS: Through relentless effort and dedication, the Cure Mito Foundation has shown that a small group of determined individuals can drive extraordinary change. By building a global patient registry, advancing data sharing and research, developing patient-centric education and support, and facilitating collaboration among scientists, clinicians, and families, the Foundation has created momentum toward effective treatments. With support from the Chan Zuckerberg Initiative’s Rare As One grant, Cure Mito is poised to expand its impact even further.

While nurse leaders have a voice in some organizational decisions, their moral resilience and moral injury can be affected by organizational structures and processes during a public health emergency such as the COVID-19 pandemic. The purpose of this exploratory descriptive analysis was to characterize the differences and commonalities between types of nurse leaders and their experiences of perceived organizational effectiveness, moral injury, and moral resilience during the COVID-19 pandemic. This was a quantitative study conducted via an online, national, cross-sectional survey. The survey included sociodemographic and professional practice questions, validated instruments measuring organizational effectiveness, moral injury, and moral resilience. Open-ended questions allowed participants to expand on topics of particular interest. Quantitative data were analyzed using ANCOVA models, qualitative data accompanies the quantitative results for descriptive elaboration. In total, 763 nurse leaders were included in the analysis. Executives scored higher on overall organizational effectiveness than other leaders but not nurse managers. Examining the differences in specific facets of organizational effectiveness revealed that nurse managers rated several aspects of staffing lower than executives. One-third of respondents met the threshold for clinically significant levels of moral injury (score ≥ 36). No significant differences were found between nurse leader roles on moral injury. ANCOVAs indicated that nurse executives had higher total moral resilience than either nurse managers (p = 0.030) or other leaders (p < 0.001). In the open-ended questions, nurse leaders discussed two additional facets of organizational effectiveness that affected moral injury and moral resilience: (1) inequity between healthcare workers in different roles, and (2) an imbalance between organizational finances and patient safety. Organizations can promote retention and moral resilience among nurse leaders by cultivating trustworthy behaviors. This may be achieved through authentic communication and transparency, and by promoting the values reflected in the nursing code of ethics. Not applicable.

OBJECTIVES/GOALS: Adoption of the Observational Medical Outcomes Partnership (OMOP) common data model promises to transform large-scale observational health research. However, there are diverse challenges for operationalizing OMOP in terms of interoperability and technical skills among coordinating centers throughout the US. METHODS/STUDY POPULATION: A team from the Critical Path Institute (C-Path) collaborated with the informatics team members at Johns Hopkins to provide technical support to participating sites as part of the Extract, Transform, and Load (ETL) process linking existing concepts to OMOP concepts. Health systems met regularly via teleconference to review challenges and progress in ETL process. Sites were responsible for performing the local ETL process with assistance and securely provisioning de-identified data as part of the CURE ID program. RESULTS/ANTICIPATED RESULTS: More than twenty health systems participated in the CURE ID effort.Laboratory measures, basic demographics, disease diagnoses and problem list were more easily mapped to OMOP concepts by CURE ID partner institutions. Outcomes, social determinants of health, medical devices, and specific treatments were less easily characterized as part of the project. Concepts within the medical record presented very different technical challenges in terms of representation. There is a lack of standardization in OMOP implementation even among centers using the same electronic medical health record. Readiness to adopt OMOP varied across the institutions who participated. Health systems achieved variable level of coverage using OMOP medical concepts as part of the initiative. DISCUSSION/SIGNIFICANCE: Adoption of OMOP involves local stakeholder knowledge and implementation. Variable complexity of health concepts contributed to variable coverage. Documentation and support require extensive time and effort. Open-source software can be technically challenging. Interoperability of secure data systems presents unique problems.

Background. During a public health crisis, such as the COVID-19 pandemic, nurse leaders coordinate timely high-quality care, maintain profit margins, and ensure regulatory compliance while supporting the health and wellbeing of the nursing workforce. In a rapidly changing environment where resources may be scarce, nurse leaders are vulnerable to moral injury; however, organizational effectiveness may help to buffer moral challenges in healthcare leadership, thereby fostering greater moral resilience and reducing turnover intention. Aim. To understand mechanisms by which perceived organizational effectiveness contributes to nurse leaders’ moral wellness (i.e., moral injury and moral resilience) and thereby effects work outcomes (i.e., engagement, burnout, and turnover intention). Methods. A cross-sectional survey of nurse leaders (N = 817) from across the United States was conducted using a snowball methodology, independent t-tests, and structural equation modeling to examine theoretical relationships among moral injury, moral resilience, and organizational effectiveness. Results. Higher ratings on every facet of perceived organizational effectiveness were significantly related to greater moral resilience (p<0.001 for all t-tests) and lower moral injury (p<0.001 for all t-tests) among nurse leaders. Structural equation models indicated both moral resilience and moral injury were significant mediators of the relationship between organizational effectiveness and work outcomes. Moral resilience and moral injury significantly mediated the effect of organizational effectiveness on burnout. Moral resilience was also a significant mediator of the relationship between organizational effectiveness and moral injury. Conclusion. Dismantling organizational patterns and processes in healthcare organizations that contribute to moral injury and lower moral resilience may be important levers for increasing engagement, decreasing burnout, and reducing turnover of nurse leaders.

Objective: Amyotrophic lateral sclerosis (ALS) is an incurable, progressive neurodegenerative disease with a significant health burden and poorly understood etiology. This analysis assessed the narrative responses from 3,061 participants in the Centers for Disease Control and Prevention's National ALS Registry who answered the question, "What do you think caused your ALS?" Methods: Data analysis used qualitative methods and artificial intelligence (AI) using natural language processing (NLP), specifically, Bidirectional Encoder Representations from Transformers (BERT) to explore responses regarding participants' perceptions of the cause of their disease. Results: Both qualitative and AI analysis methods revealed several, often aligned themes, which pointed to perceived causes including genetic, environmental, and military exposures. However, the qualitative analysis revealed detailed themes and subthemes, providing a more comprehensive understanding of participants' perceptions. Although there were areas of alignment between AI and qualitative analysis, AI's broader categories did not capture the nuances discovered using the more traditional, qualitative approach. The qualitative analysis also revealed that the potential causes of ALS were described within narratives that sometimes indicate self-blame and other maladaptive coping mechanisms. Conclusions: This analysis highlights the diverse range of factors that individuals with ALS consider as perceived causes for their disease. Understanding these perceptions can help clinicians to better support people living with ALS (PLWALS). The analysis highlights the benefits of using traditional qualitative methods to supplement or improve upon AI-based approaches. This rapidly evolving area of data science has the potential to remove barriers to accessing the rich narratives of people with lived experience.

Anderson, Wesley; Boyce, Danielle; Kurtycz, Ruth; Roddy, Will; Heavner, Smith Author Information

AbstractObjectiveTo evaluate the Refractory Epilepsy Screening Tool for Lennox–Gastaut Syndrome (REST‐LGS) for real‐world identification of LGS in adults and to develop a scoring system for the tool.MethodsA retrospective chart review of adults with drug resistant epilepsy (DRE) and intellectual development disorder (IDD) was conducted by 2 primary care providers blinded to diagnosis. The REST‐LGS was designed via the Modified Delphi Consensus and was previously validated. This tool consists of 8 criteria (4 major, 4 minor) considered indicative of LGS. To account for missing data in the earlier validation study and to evaluate applicability in a real‐world setting, the REST‐LGS was refined to include a scoring system in which major criteria were more heavily weighted than minor criteria, producing categories of “likely” (>11 points), “possible” (8–11 points), and “unlikely” (<8 points) LGS. Statistical analyses were descriptive.ResultsOf the 100 patients included in the analysis, data for slow spike–waves in electroencephalography and seizure onset age – both major REST‐LGS criteria – were missing for 46% and 42% of patients, respectively. The majority of patients met 4 of the 8 REST‐LGS criteria (cognitive impairment since childhood, 71%; persistent seizures despite a trial of ≥2 antiseizure medications, 65%; seizure onset before the age of 12 years, 57%; ≥2 seizure types, 56%). All 4 major criteria were met in 22 patients (22%). The percentages of patients considered “likely,” “possible,” or “unlikely” to have LGS were 26%, 30%, and 44%, respectively. Of the 74 patients without a previous LGS diagnosis, 42 (57%) were identified as “possible” or “likely” to have LGS using REST‐LGS.SignificanceIn this analysis, the validated REST‐LGS was evaluated in a real‐world setting. The majority of previously undiagnosed patients were identified via REST‐LGS as “possible” or “likely” to have LGS. Extensive missing data highlights challenges of LGS diagnosis in adults.Plain Language SummaryThere is a need to identify adult patients with Lennox–Gastaut syndrome (LGS) so they can receive appropriate treatment. The Refractory Epilepsy Screening Tool for LGS (REST‐LGS) questionnaire was designed by experts to identify whether patients with seizures that are not controlled by medications may have LGS. In this study, 2 physicians completed the REST‐LGS using charts for 100 patients who experience seizures not controlled by medications. Of the patients who were previously diagnosed as not having LGS, the majority were “likely” or “possible” to have LGS based on the REST‐LGS; therefore, the REST‐LGS can identify patients for further evaluation.

Objective: The revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) is the most commonly used outcome measure in ALS studies. The aim of this study was to identify potential limitations of the ALSFRS-R from the perspective of people living with ALS and their caregivers. Methods: A web-based survey was developed by investigators, people living with ALS, and their caregivers, and shared across social media. For each item, participants were asked, "Can you think of a situation where you might not be able to answer this item accurately or that your answer might not reflect your abilities?" Responses were divided into two categories: criticisms that could be addressed in a manual or issues with the items/responses that would require measure modification. Results: 57 participants (72% participants with ALS, 28% caregivers) responded to at least one item question, of which 71.9% expressed concern about at least one item. The most frequently identified items were speech, walking, and cutting food. Common criticisms were: language used is of a medical literacy level too high; item is situational; difficult to distinguish the difference between response choices; and the structure and/or underlying assumptions of the item makes it difficult to answer. Conclusions: Several items of the ALSFRS-R were considered to inaccurately reflect the abilities of patients with ALS. The ALSFRS-R may need a revision to address these issues, preferably in co-development with people living with ALS and their caregivers, and/or alternate outcome measures should be considered for patients with ALS.

AIM:To refine the Rushton Moral Resilience Scale (RMRS) by creating a more concise scale, improving the reliability, particularly of the personal integrity subscale and providing further evidence of validity.BACKGROUND:Healthcare workers are exposed to moral adversity in practice. When unable to preserve/restore their integrity, moral suffering ensues. Moral resilience is a resource that may mitigate negative consequences. To better understand mechanisms for doing so, a valid and reliable measurement tool is necessary.DESIGN:Cross-sectional survey.METHODS:Participants (N = 1297) had completed ≥1 items on the RMRS as part of the baseline survey of a larger longitudinal study. Item analysis, confirmatory factor analyses, reliability analyses (Cronbach's alpha), and correlations were used to establish reliability and validity of the revised RMRS.RESULTS:Item and confirmatory factor analysis were used to refine the RMRS from 21 to 16 items. The four-factor structure (responses to moral adversity, personal integrity, relational integrity and moral efficacy) demonstrated adequate fit in follow-up confirmatory analyses in the initial and hold-out sub-samples. All subscales and the total scale had adequate reliabilities (α ≥ 0.70). A higher-order factor analysis supports the computation of either subscale scores or a total scale score. Correlations of scores with stress, anxiety, depression and moral distress provide evidence of the scale's validity. Reliability of the personal integrity subscale improved.CONCLUSION AND IMPLICATIONS:The RMRS-16 demonstrates adequate reliability and validity, particularly the personal integrity subscale. Moral resilience is an important lever for reducing consequences when confronted with ethical challenges in practice. Improved reliability of the four subscales and having a shorter overall scale allow for targeted application and will facilitate further research and intervention development.PATIENT/PUBLIC CONTRIBUTION:Data came from a larger study of Canadian healthcare workers from multiple healthcare organizations who completed a survey about their experiences during COVID-19.

Background Leigh Syndrome (LS) is a rare genetic neurometabolic disorder, that leads to the degeneration of the central nervous system and subsequently, early death. LS can be caused by over 80 mutations in mitochondrial or nuclear DNA. Patient registries are important for many reasons, such as studying the natural history of the disease, improving the quality of care, and understanding the healthcare burden. For rare diseases, patient registries are significantly important as patient numbers are small, and funding is limited. Cure Mito Foundation started a global patient registry for LS in September 2021 to identify and learn about the LS patient population, facilitate clinical trial recruitment, and unite international patients and researchers. Priorities were to allow researchers and industry partners to access data at no cost through a clear and transparent process, active patient engagement, and sharing of results back to the community. Results Patient registry platform, survey design, data analysis process, and patient recruitment strategies are described. Reported results include demographics, diagnostic information, symptom history, loss of milestones, disease management, healthcare utilization, quality of life, and caregiver burden for 116 participants. Results show a high disease burden, but a relatively short time to diagnosis. Despite the challenges faced by families impacted by Leigh syndrome, participants, in general, are described as having a good quality of life and caregivers are overall resilient, while also reporting a significant amount of stress. Conclusion This registry provides a straightforward, no-cost mechanism for data sharing and contacting patients for clinical trials or research participation, which is important given the recruitment challenges for clinical trials for rare diseases. This is the first publication to present results from a global patient registry for Leigh Syndrome, with details on a variety of patient-specific and caregiver outcomes reported for the first time. Additionally, this registry is the first for any mitochondrial disease with nearly 70% of participants residing outside of the United States. Future efforts include continued publication of results and further collaboration with patients, industry partners, and researchers.

BackgroundNurses face many ethical challenges, placing them at risk for moral distress and burnout and challenging their ability to provide safe, high-quality patient care. Little is known about the sustainability of interventions to address this problem.ObjectiveTo determine the long-term impact on acute care nurses of a 6-session experiential educational program called the Mindful Ethical Practice and Resilience Academy (MEPRA).MethodsMEPRA includes facilitated discussion, role play, guided mindfulness and reflective practices, case studies, and high-fidelity simulation training to improve nurses’ skills in mindfulness, resilience, and competence in confronting ethical challenges. A prospective, longitudinal study was conducted on the impact of the MEPRA curriculum at 2 hospitals in a large academic medical system. The study involved surveys of 245 nurses at baseline, immediately after the intervention, and 3 and 6 months after the intervention.ResultsThe results of the intervention were generally sustained for months afterward. The most robust improvements were in ethical confidence, moral competence, resilience, work engagement, mindfulness, emotional exhaustion, depression, and anger. Some outcomes were not improved immediately after the intervention but were significantly improved at 3 months, including anxiety and empathy. Depersonalization and turnover intentions were initially reduced, but these improvements were not sustained at 6 months.ConclusionsMany MEPRA results were sustained at 3 and 6 months after conclusion of the initial foundational program. Some outcomes such as depersonalization and turnover intentions may benefit from boosters of the intervention or efforts to supplement the training by making organizational changes to the work environment.

In Brief It's crucial to understand the perspective of nurses during the pandemic to determine actionable steps for moving forward. This analysis looks at nurses' perceptions of their organizations' effectiveness during the first surge of the COVID-19 pandemic and its impact on moral injury and moral resilience.

TOPIC: Obstructive Lung Diseases TYPE: Original Investigations PURPOSE: Although COPD is one of the leading causes of disability and disease in the US, a significant proportion of the population with evidence of COPD remain undiagnosed, and even after diagnosis patients face barriers in the optimum treatment of their disease. This study was designed with the aim to gain a better understanding of the treatment and life journey of people with COPD. METHODS: This observational study recruited patients from the COPD Foundation's Patient Powered Research Network (PPRN) who participated in an online survey from 2/8/2021 through 3/3/2021. All participants completed an informed consent process before completing the survey and both the PPRN and this survey were approved by the Western IRB. The Survey asked questions covering a range of topics including age and circumstances of diagnosis to their current treatment, including access to medication and education on how to use their therapies. RESULTS: 669 COPD PPRN participants completed the Patient Journey survey on the online platform, including 275 (41%) men and 394 (59%) women with a mean age of 66.79% reported that their illness was called COPD at the time of diagnosis, although 33% reported that they had symptoms for over three years prior to their diagnosis, with another 37% reporting symptoms for 1-2 years. The most common symptoms reported at the time of diagnosis included shortness of breath while exercising or walking up steps, difficulty breathing, frequent coughing, and fatigue. While most patients (79%) reported that they have been shown how to use their inhalers, 46% also reported they have never been asked to demonstrate that they know how to use their devices. 53% of participants reported using nebulized medications, with the most common reason for their use being that "Medicine works better in nebulizer than puffers or inhalers". 65% of participants reported using oral steroids or steroid shots for their COPD, including 13% who stated that they used steroids "regularly, daily, or weekly for several weeks or months". CONCLUSIONS: A large proportion of COPD patients in this survey had symptoms for years prior to their diagnosis. While most patients have been shown how to use their therapies, many have not been asked to demonstrate their ability, which may explain why patients feel nebulized therapies work better. Finally, the regular use of steroids in these patients occurs in a significant minority of patients. CLINICAL IMPLICATIONS: This survey provides opportunities to improve the diagnosis and outcomes among patients with COPD. These include earlier identification of symptomatic patients, better education on how to use current therapies, and better identification of patients at risk for complications due to overutilization of steroids. DISCLOSURES: Employee relationship with GSK Please note: 05/01/2011 Added 04/23/2021 by Carl Abbott, source=Web Response, value=Salary No relevant relationships by Danielle Boyce, source=Web Response No relevant relationships by Elisha Malanga, source=Web Response Employee relationship with GlaxoSmithKline Please note: >$100000 by David Mannino, source=Web Response, value=Salary Employee relationship with GSK Please note: 8/2017-9/2020 Added 04/22/2021 by David Mannino, source=Web Response, value=Salary Consultant relationship with COPD Foundation Please note: 11/2020 - present Added 04/22/2021 by David Mannino, source=Web Response, value=Salary No relevant relationships by Gretchen McCreary, source=Web Response Employee relationship with GSK Please note: Jan 2017 to present Added 04/29/2021 by Tania Vila, source=Web Response, value=Salary Employee relationship with GSK Please note: ~Jun2017 to present Added 04/29/2021 by Tania Vila, source=Web Response, value=stock holder

Several reports have been published addressing the potential impact of the severe acute respiratory syndrome coronavirus-2 (SARS CoV-2), or coronavirus disease 2019 (COVID-19) pandemic on the health and well-being of health care workers, people who develop COVID-19, and those impacted by the

PURPOSE:The COVID-19 pandemic has presented challenges for health communications with special concerns for people with chronic diseases.Those with COPD are at increased risk for COVID-19 and adverse outcomes making messaging about COVID-19 highly important to this group.Therefore, it is helpful to understand the impact of perceived misinformation and the confusion surrounding COVID-19 on people with COPD. METHODS: Using information published in the medical literature and on social media, we developed the COPD & Coping with COVID Pandemic Survey.The survey was offered to the members of the COPD Foundation's Patient-Powered Research Network (PPRN) with self-reported physician diagnosis of COPD.The survey was divided into seven domains: Activities, Living Situations, Healthcare Use & Self-Management, Getting & Interpreting Health Information, the New Norm, Finances and Coping Strategies & Abilities, with multiple issues and concerns under each of the domains.Here we report results from the domain Getting & Interpreting Information including the results of more detailed queries for those reporting concerns/ anxiety regarding health information.The more specific queries included finding accurate information about COVID-19 risk and prevention; understanding what information means; getting information from doctor's office; confusion when information and recommendations change or conflict; explaining recommendations for people with COPD to others; and information overload.RESULTS: Of the 640 responses to the Getting & Interpreting Information domain, the following expressed increased concern/anxiety in the following areas: 49% about understanding what information means, 42% confusion around conflicting information, 40% reported increased concerns/anxiety around where to find accurate information, 38% information overload, and 30% explaining recommendations for those with COPD to others.For people with increased concerns about where to find accurate information, 50% worried information was being withheld from the public.For people with increased concerns around understanding information/getting information from their doctor, 54% were upset with the continued changes in recommendations around wearing masks and 35% did not trust any information.For those with increased concerns around recommendations changing over time or conflicting, 73% felt stressed due to not knowing when to trust new information or changing information, and 48% were worried about why those recommendations change daily or weekly.CONCLUSIONS: Health care professionals (HCP) are often the resource for accurate medical information for individuals living with COPD and that need has become more acute during the COVID-19 pandemic.CLINICAL IMPLICATIONS: It is important for HCP to understand the concerns of people with COPD so they can develop effective communication strategies to support this group at risk for adverse COVID-19 outcomes.