Changing high-risk asthma in Memphis through partnership: Results from the CHAMP program.

BACKGROUND: Children in metro Shelby County, Tennessee, have disproportionally high asthma-related health care resource use (HRU) compared with those in other regions in Tennessee. OBJECTIVE: To describe the goals, logistics, and outcomes of the Changing High-Risk Asthma in Memphis through Partnership (CHAMP) program implemented to improve pediatric asthma care in Shelby County. METHODS: CHAMP established a multidisciplinary team with dedicated medical staff and community health workers, implemented a 24/7 call line to improve access to care, established a patient data registry to address fragmented care, assigned community health educators to improve asthma education and social needs, and partnered with services to address environmental triggers and social determinants of health. Patients eligible for CHAMP are Shelby County residents aged 2 to 18 years with high-risk asthma enrolled in Tennessee's Medicaid managed care program. Health care resource use outcomes 1-year pre- and post-CHAMP enrollment were analyzed for patients who had completed 1 year of CHAMP between January 2013 and December 2022. The 24/7 call line data between November 2013 and December 2022 were analyzed. RESULTS: CHAMP has enrolled 1348 children; 945 have completed 1 year (63% male; 90% identified as Black). At 1-year post-CHAMP enrollment, patients had 58%, 68%, 42%, and 53% reductions in emergency department visits, inpatient and observation visits, urgent care visits, and total asthma exacerbations, respectively. The number of asthma exacerbations per patient significantly decreased from 2.97 to 1.40 at 1-year post-CHAMP enrollment. Of the calls made to the 24/7 call line, 58% occurred after hours and 52% led to issue resolution without a medical facility visit. CONCLUSION: CHAMP successfully decreased asthma HRU in children with high-risk asthma in Shelby County by implementing initiatives that targeted barriers to asthma care.

"Black People Like Me": A virtual conference series to engage underserved patients with asthma in patient centered outcomes research.

BACKGROUND: In response to racial inequity in asthma, asthma-related research among diverse patients is vital. However, people from historically marginalized groups are underrepresented in clinical and patient-centered outcomes research (PCOR). The "Black People Like Me" (BPLM) virtual conference series was developed to: (1) engage Black patients with asthma and their caregivers in education and discussions about asthma, and (2) encourage involvement in PCOR. Education about COVID-19 and COVID-19 vaccination was also incorporated. METHODS: The Project Advisory Group consisting of Black patients, clergy, physicians, and a program evaluator met monthly to develop BPLM. The program consisted of free one-hour virtual sessions held monthly for 6 months. BPLM was promoted through the Allergy & Asthma Network website, emails, social media, and personal contacts with a recruitment goal of ≥ 100 Black patients with asthma or caregivers. Program evaluations, interactive polling questions during each session, and participant pre- and post-session tests were conducted. RESULTS: Sessions averaged 658 participants including Black patients, family members, caregivers, Black clergy, health care providers, and other concerned community. Overall, 77% of participants strongly agreed with satisfaction with the sessions. Pre- and post-tests demonstrated that participants exhibited growth in knowledge regarding asthma risk, PCOR, and PCOR research opportunities for patients, exhibited preexisting and sustained knowledge regarding COVID-19 vaccination and side effects, and demonstrated an increased sense of empowerment during healthcare visits. CONCLUSIONS: BPLM demonstrated that a virtual platform can successfully engage Black communities. Incorporating clergy and religious organizations was critical in developing the trust of the Black community towards BPLM.

Environmental impact of inhaler devices on respiratory care: a narrative review.

Climate change is a huge and present threat to human health. This article aims to deepen the knowledge about the environmental impact of inhaler devices on their carbon footprint for patients and health professionals, providing information that allows a better choice of the type of device to be prescribed for the treatment of asthma and COPD. This narrative and nonsystematic review was carried out by searching databases (PubMed, Google Scholar, SciELO, and EMBASE) for articles published between 2017 and 2022, written in Portuguese or in English, using the search words "inhalation device" OR "environmental." The review showed that global warming cannot be addressed by focusing only on inhaler devices. However, the devices that we use to treat respiratory diseases such as asthma and COPD, which are diseases that are aggravated by climate change, are also causing that change. Therefore, health professionals, patient organizations, and industries should take a lead in health policies to offer affordable alternatives to inhalers containing hydrofluoroalkane.

Corticosteroid exposure and cumulative effects in patients with eczema: Results from a patient survey.

BACKGROUND: Individuals with eczema may have substantial lifetime corticosteroid exposure, increasing the risk of corticosteroid-related side effects. OBJECTIVE: To conduct a patient survey evaluating corticosteroid exposure and its cumulative effects in individuals with eczema. METHODS: The multinational online survey was conducted between November 5, 2020, and January 11, 2021. Participants were aged 18 years or older and a patient (n = 1889) or a caregiver of a child (n = 271) diagnosed with having eczema by a medical professional. RESULTS: All participants reported using corticosteroids. Average duration of topical corticosteroid (TCS) use was 15.3 years in adults and 3.6 years in children; 75% used TCS 1 to 2 times a day and 50% applied TCS 15 to 30 days/mo. Frequency and duration could not be determined by varying prescription TCS potencies. Oral corticosteroid use was reported by 36% of the participants (23% for eczema), with a lifetime average of 8.4 courses in adults and 8.1 courses in children. Corticosteroids for non-eczema atopic conditions were reported by 49% of the participants. In participants using TCS, 83% of adults and 64% of children experienced worsening symptoms over time. Development of new symptoms and conditions increased with a greater number of corticosteroid treatments and longer duration of TCS use but may have been owing to eczema progression. Symptoms consistent with topical steroid withdrawal syndrome after TCS discontinuation were reported by many participants. CONCLUSION: Reported substantial corticosteroid exposure throughout their lifetime eczema experience placed participants at risk of negative outcomes. Corticosteroids are a critical component of eczema treatment for many patients. However, careful corticosteroid prescribing practices and monitoring are needed to avoid side effects. When possible, corticosteroid-sparing strategies should be explored.

COVID-19 pandemic impact on telehealth use and perceptions for atopic and respiratory disease: Survey results.

Background: Telehealth use increased during the coronavirus disease 2019 (COVID-19) pandemic to provide patient care while deferring to social distancing recommendations. Objective: Health-care provider and patient surveys were conducted to assess the impact of COVID-19 on the use and perception of telehealth visits for atopic and respiratory diseases. Methods: Health-care provider (N = 200) and patient (N = 200) surveys were conducted in the United States between September and October, 2020, and January, 2021. The participants were required to have used telehealth before or after March 1, 2020, the cutoff date selected to represent the start of the COVID-19 pandemic. Results: Before the pandemic, 40% of the health-care provider participants were conducting telehealth visits, which increased to 100% after the pandemic started. The average time spent per telehealth visit with patients increased from 13 to 16 minutes. A higher percentage of family medicine physicians/pediatricians had access to most monitoring tools than allergy/dermatology specialists both before the pandemic and after the pandemic started. Practice expenses reportedly increased after the pandemic started for 42% of participants. Before the pandemic, 27% of the patient participants used telehealth, which increased to 94% after the pandemic started. Ratings of "good" or "excellent" for the overall telehealth experience by the health-care provider participants improved from 44% before to 60% after the pandemic started, and by the patient participants improved from 77% to 88%. The willingness by the health-care provider participants to recommend telehealth to colleagues improved from 73% before to 83% after the pandemic started. The willingness by the patient participants to use telehealth again dropped slightly, from 94% to 89%. Conclusion: Telehealth visits for atopic and respiratory diseases increased during the COVID-19 pandemic. Telehealth experiences were overall positive, particularly for the patients.

Quality Standard Position Statements for Health System Policy Changes in Diagnosis and Management of COPD: A Global Perspective.

INTRODUCTION: Despite being a leading cause of death worldwide, chronic obstructive pulmonary disease (COPD) is underdiagnosed and underprioritized within healthcare systems. Existing healthcare policies should be revisited to include COPD prevention and management as a global priority. Here, we propose and describe health system quality standard position statements that should be implemented as a consistent standard of care for patients with COPD. METHODS: A multidisciplinary group of clinicians with expertise in COPD management together with patient advocates from eight countries participated in a quality standards review meeting convened in April 2021. The principal objective was to achieve consensus on global health system priorities to ensure consistent standards of care for COPD. These quality standard position statements were either evidence-based or reflected the combined views of the panel. RESULTS: On the basis of discussions, the experts adopted five quality standard position statements, including the rationale for their inclusion, supporting clinical evidence, and essential criteria for quality metrics. These quality standard position statements emphasize the core elements of COPD care, including (1) diagnosis, (2) adequate patient and caregiver education, (3) access to medical and nonmedical treatments aligned with the latest evidence-based recommendations and appropriate management by a respiratory specialist when required, (4) appropriate management of acute COPD exacerbations, and (5) regular patient and caregiver follow-up for care plan reviews. CONCLUSIONS: These practical quality standards may be applicable to and implemented at both local and national levels. While universally applicable to the core elements of appropriate COPD care, they can be adapted to consider differences in healthcare resources and priorities, organizational structure, and care delivery capabilities of individual healthcare systems. We encourage the adoption of these global quality standards by policymakers and healthcare practitioners alike to inform national and regional health system policy revisions to improve the quality and consistency of COPD care worldwide.

Needs assessment: knowledge of self-management of asthma for children with co-morbid physical and intellectual disabilities: brief report.

OBJECTIVES: The main goal of this study was to conduct a needs assessment to ascertain professionals' and parents' knowledge of and perceptions about education for self-management of asthma for children with physical and intellectual disabilities (IDs). Another goal was to understand needs for education of children with IDs about severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2; coronavirus) and other infectious diseases. METHODS: Surveys, presented in the RedCap system, were administered online. Respondents (n = 498) were recruited through sites and listservs for children with disabilities and individuals with asthma. Respondents answered eight questions about knowledge and education for self-management of asthma for children with physical disabilities and IDs. Respondents answered four questions pertaining to management of coronavirus for children with IDs. RESULTS: Respondents' indicated that it would be easier to educate youth with mild or moderate versus severe levels of disabilities. Children with IDs may not receive the education they need to manage their asthma. When comparing those in different occupations, teachers reported lower knowledge for educating children with IDs about asthma management and coronavirus. CONCLUSIONS: Doctors and nurses can develop programs for children with physical disabilities and IDs. Programming for youth with severe impairments is needed and perhaps developmentally appropriate programming for youth with IDs will improve education of youth and, concomitantly improve their self-management of asthma and potentially quality of life. Educating teachers is critical specifically about asthma triggers, how to involve youth in self-care, and how to educate children with IDs about coronavirus.Abbreviations:U.S.: United States;IDs: intellectual disabilities.

Environmental impact of inhaler devices on respiratory care: a narrative review / Impacto ambiental dos dispositivos inalatórios nos cuidados respiratórios: uma revisão narrativa

ABSTRACT Climate change is a huge and present threat to human health. This article aims to deepen the knowledge about the environmental impact of inhaler devices on their carbon footprint for patients and health professionals, providing information that allows a better choice of the type of device to be prescribed for the treatment of asthma and COPD. This narrative and nonsystematic review was carried out by searching databases (PubMed, Google Scholar, SciELO, and EMBASE) for articles published between 2017 and 2022, written in Portuguese or in English, using the search words "inhalation device" OR "environmental." The review showed that global warming cannot be addressed by focusing only on inhaler devices. However, the devices that we use to treat respiratory diseases such as asthma and COPD, which are diseases that are aggravated by climate change, are also causing that change. Therefore, health professionals, patient organizations, and industries should take a lead in health policies to offer affordable alternatives to inhalers containing hydrofluoroalkane.

RESUMO As mudanças climáticas são uma ameaça enorme e presente para a saúde humana. Este artigo visa aprofundar o conhecimento sobre o impacto ambiental dos dispositivos inalatórios na pegada de carbono para pacientes e profissionais de saúde, fornecendo informações que permitem uma melhor escolha do tipo de dispositivo a ser prescrito para o tratamento da asma e da DPOC. Esta revisão narrativa e não sistemática foi realizada por meio de busca nas bases de dados PubMed, Google Acadêmico, SciELO e EMBASE de artigos publicados entre 2017 e 2022, escritos em português ou inglês, utilizando as palavras de busca "inhalation device" OR "environmental". A revisão mostrou que o aquecimento global não pode ser abordado com foco em dispositivos inalatórios apenas. No entanto, os dispositivos que utilizamos para tratar doenças respiratórias como asma e DPOC, que são doenças agravadas pelas mudanças climáticas, também estão causando essa mudança. Portanto, profissionais de saúde, organizações de pacientes e indústrias devem assumir a liderança nas políticas de saúde para oferecer alternativas acessíveis aos inaladores contendo hidrofluoralcano.

Ensuring Access to Albuterol in Schools: From Policy to Implementation. An Official ATS/AANMA/ALA/NASN Policy Statement.

Rationale: For children with asthma, access to quick-relief medications is critical to minimizing morbidity and mortality. An innovative and practical approach to ensure access at school is to maintain a supply of stock albuterol that can be used by any student who experiences respiratory distress. To make this possible, state laws allowing for stock albuterol are needed to improve medication access.Objectives: To provide policy recommendations and outline steps for passing and implementing stock albuterol laws.Methods: We assembled a diverse stakeholder group and reviewed guidelines, literature, statutes, regulations, and implementation documents related to school-based medication access. Stakeholders were divided into two groups-legislation and implementation-on the basis of expertise. Each group met virtually to review documents and draft recommendations. Recommendations were compiled and revised in iterative remote meetings with all stakeholders.Main Results: We offer several recommendations for crafting state legislation and facilitating program implementation. 1) Create a coalition of stakeholders to champion legislation and implement stock albuterol programs. The coalition should include school administrators, school nurses and health personnel, parents, or caregivers of children with asthma, pediatric primary care and subspecialty providers (e.g., pulmonologists/allergists), pharmacists, health department staff, and local/regional/national advocacy organizations. 2) Legislative components critical for effective implementation of stock albuterol programs include specifying that medication can be administered in good faith to any child in respiratory distress, establishing training requirements for school staff, providing immunity from civil liability for staff and prescribers, ensuring pharmacy laws allow prescriptions to be dispensed to schools, and suggesting inhalers with valved holding chambers/spacers for administration. 3) Select an experienced and committed legislator to sponsor legislation and guide revisions as needed during passage and implementation. This person should be from the majority party and serve on the legislature's health or education committee. 4) Develop plans to disseminate legislation and regulations/policies to affected groups, including school administrators, school nurses, pharmacists, emergency responders, and primary/subspecialty clinicians. Periodically evaluate implementation effectiveness and need for adjustments.Conclusions: Stock albuterol in schools is a safe, practical, and potentially life-saving option for children with asthma, whether asthma is diagnosed or undiagnosed, who lack access to their personal quick-relief medication. Legislation is imperative for aiding in the adoption and implementation of school stock albuterol policies, and key policy inclusions can lay the groundwork for success. Future work should focus on passing legislation in all states, implementing policy in schools, and evaluating the impact of such programs on academic and health outcomes.

Management of asthma in childhood: study protocol of a systematic evidence update by the Paediatric Asthma in Real Life (PeARL) Think Tank.

INTRODUCTION: Clinical recommendations for childhood asthma are often based on data extrapolated from studies conducted in adults, despite significant differences in mechanisms and response to treatments. The Paediatric Asthma in Real Life (PeARL) Think Tank aspires to develop recommendations based on the best available evidence from studies in children. An overview of systematic reviews (SRs) on paediatric asthma maintenance management and an SR of treatments for acute asthma attacks in children, requiring an emergency presentation with/without hospital admission will be conducted. METHODS AND ANALYSIS: Standard methodology recommended by Cochrane will be followed. Maintenance pharmacotherapy of childhood asthma will be evaluated in an overview of SRs published after 2005 and including clinical trials or real-life studies. For evaluating pharmacotherapy of acute asthma attacks leading to an emergency presentation with/without hospital admission, we opted to conduct de novo synthesis in the absence of adequate up-to-date published SRs. For the SR of acute asthma pharmacotherapy, we will consider eligible SRs, clinical trials or real-life studies without time restrictions. Our evidence updates will be based on broad searches of Pubmed/Medline and the Cochrane Library. We will use A MeaSurement Tool to Assess systematic Reviews, V.2, Cochrane risk of bias 2 and REal Life EVidence AssessmeNt Tool to evaluate the methodological quality of SRs, controlled clinical trials and real-life studies, respectively.Next, we will further assess interventions for acute severe asthma attacks with positive clinical results in meta-analyses. We will include both controlled clinical trials and observational studies and will assess their quality using the previously mentioned tools. We will employ random effect models for conducting meta-analyses, and Grading of Recommendations Assessment, Development and Evaluation methodology to assess certainty in the body of evidence. ETHICS AND DISSEMINATION: Ethics approval is not required for SRs. Our findings will be published in peer reviewed journals and will inform clinical recommendations being developed by the PeARL Think Tank. PROSPERO REGISTRATION NUMBERS: CRD42020132990, CRD42020171624.

A multistakeholder Delphi consensus core outcome set for clinical trials in moderate-to-severe asthma (coreASTHMA).

BACKGROUND: Treatments for long-term control of asthma have improved and include a promising but expensive class of biologic therapies. However, the clinical trials evaluating these and other novel treatments have used a variety of different outcomes to evaluate efficacy. The evolution of asthma care calls for a re-examination of outcomes that are most important to patients and other stakeholders. OBJECTIVE: To develop a core set of outcomes to be measured in phase 3 and phase 4 clinical drug trials in patients with moderate-to-severe asthma. METHODS: We used a robust and in-depth multistakeholder consensus process bringing together patients, clinicians, regulators, payers, health technology assessors, researchers, and product developers to reach consensus on outcomes. We used a modified Delphi method to reach consensus, an approach adapted from the Core Outcome Measures in Effectiveness Trials Initiative aligned with contemporary methodological standards for core outcome set development. RESULTS: The following outcomes were included in the final core set: severe asthma exacerbation, change in asthma control, asthma-specific or severe asthma-specific quality of life, asthma-specific hospital stay (ie, >24-hour stays at any level of care) or admission, and asthma-specific emergency department visit. CONCLUSION: These 5 outcomes represent a minimum set of core outcomes for use in phase 3 and phase 4 clinical drug trials in moderate-to-severe asthma. Consistent collection of these outcomes as minimum, independent of whether additional heterogeneous primary or secondary outcomes are included, will allow for meaningful comparisons of the effect of asthma therapies across clinical trials.

Cannabis attitudes and patterns of use among followers of the Allergy & Asthma Network.

BACKGROUND: Cannabis use in patients with allergy/asthma, a high-risk group for adverse effects to cannabis, is unknown. OBJECTIVE: To determine the patterns of use and attitudes toward cannabis in patients with allergy/asthma. METHODS: An anonymous online survey on cannabis attitudes and use was conducted through the Adult Allergy & Asthma Network. The Asthma Control Test assessed asthma burden. Cluster analyses determined group phenotypes and factor analyses condensed cannabis subjective effects into similar response patterns. RESULTS: A total of 88 of 489 respondents (18.0%) currently use cannabis with most at the age of less than 50 years old, of female sex, and of White race. Of the noncannabis users (N = 401), 2.5% reported cannabis allergy. Cluster analysis revealed that a liberal attitude toward cannabis was associated with current cannabis use (P < .001). Among current cannabis users, 40.9% of their physicians inquired on cannabis use; only 37.5% of users wanted to discuss cannabis. In addition, 65.9% used cannabis for medical or medical/recreational purposes. Cannabinoids used were tetrahydrocannabinol (33.0%), cannabidiol (19.3%), or both (47.7%). Smoked and vaped cannabis were reported by 53.4% and 35.2%, respectively. Furthermore, 51 cannabis users (58.0%) reported current asthma with 39.2% uncontrolled; of these, 50% smoked cannabis. Compared with current participants with asthma not using cannabis, those currently using cannabis experienced similar levels of asthma control, quality of life, and frequency of asthma exacerbations. Positive effects were endorsed more than negative effects to cannabis (P < .001). Moreover, 19.3% of cannabis users reported coughing that was associated with smoking cannabis (P < .001). CONCLUSION: Cannabis was used by less than 20% of the respondents with positive effects more frequent than negative effects. Half of cannabis users with uncontrolled asthma smoke cannabis, but only a minority of the physicians inquire about its use.

Global Quality Standard for Identification and Management of Severe Asthma.

INTRODUCTION: Severe asthma is a debilitating, life-threatening disease associated with substantial global morbidity, mortality, and health care resource utilization. Patients may not receive guideline-directed medical care for severe asthma. Moreover, viable precision-based assessment tools and newer preventive therapies that can reduce the frequency of exacerbations and associated functional impact are underused. As a result, high rates of poorly controlled severe asthma persist, and patient health-related quality of life suffers. METHODS: In 2019, the Improve Access to Better Care Task Force of the PRECISION Steering Committee set out to develop a global template on quality standards for severe asthma care to support improved access to and delivery of quality care. This Quality Standard is grounded in the vast body of published evidence available for severe asthma care, published clinical guidelines (i.e., from the Global Initiative for Asthma in 2019 and the European Respiratory Society/American Thoracic Society in 2014), and the 2018 PRECISION-supported Charter to Improve Patient Care in Severe Asthma. RESULTS: The Quality Standard developed emphasizes four key elements aimed at optimizing clinical care and outcomes in severe asthma: (1) organization of services, (2) timely identification and referral for suspected severe asthma, (3) specialized assessment and management of severe asthma to optimize outcomes, and (4) patient-centric care and shared decision-making that is reflective of the patient's expectations, priorities, and values. Four key Quality Statements are provided, along with quality metrics and strategies for local adaptation to optimize implementation. CONCLUSION: This Global Quality Standard is intended to mobilize policymakers, health care providers, and patient advocacy groups to build consensus on the definition and expectations of quality care in severe asthma, to promote patient-centric care, to identify gaps in care and areas for improvement, and systematically implement improvement measures and outcomes and to reduce the burden of illness for patients with severe asthma.

Although only 10% of patients with asthma have severe disease, these patients use up to half of all health care resources used to treat asthma. For the patient, severe asthma is associated with substantial morbidity, increased risk of death, and poor quality of life. Effective treatments for severe asthma are available, yet access to these treatments varies for many patients around the globe, and they are not always used effectively when available. A task force of leading global asthma experts was recently assembled to develop global standards to support improved access and delivery of quality care for patients with severe asthma. The task force identified four key elements to optimize management and outcomes: (1) coordination of services, (2) timely detection and referral of patients with severe asthma, (3) use of guideline-recommended assessments and therapies, and (4) integration of patient expectations and values when making treatment decisions. This Quality Standard details each of these elements by providing supporting rationale, ways to measure improvements in each area, and strategies to implement these elements at local clinics around the world. Ultimately, this Quality Standard is intended to help policymakers, health care providers, patient advocacy groups, and other key stakeholders build consensus on the requirements for quality care in severe asthma to improve patient care while also reducing the overall global burden of severe asthma.

Research Priorities in Pediatric Asthma: Results of a Global Survey of Multiple Stakeholder Groups by the Pediatric Asthma in Real Life (PeARL) Think Tank.

BACKGROUND: Pediatric asthma remains a public health challenge with enormous impact worldwide. OBJECTIVE: The aim of this study was to identify and prioritize unmet clinical needs in pediatric asthma, which could be used to guide future research and policy activities. METHODS: We first identified unmet needs through an open-question survey administered to international experts in pediatric asthma who were members of the Pediatric Asthma in Real Life Think Tank. Prioritization of topics was then achieved through a second, extensive survey with global reach, of multiple stakeholders (leading experts, researchers, clinicians, patients, policy makers, and the pharmaceutical industry). Differences across responder groups were compared. RESULTS: A total of 57 unmet clinical need topics identified by international experts were prioritized by 412 participants from 5 continents and 60 countries. Prevention of disease progression and prediction of future risk, including persistence into adulthood, emerged as the most urgent research questions. Stratified care, based on biomarkers, clinical phenotypes, the children's age, and demographics were also highly rated. The identification of minimum diagnostic criteria in different age groups, cultural perceptions of asthma, and best treatment by age group were priorities for responders from low-middle-income countries. There was good agreement across different stakeholder groups in all domains with some notable exceptions that highlight the importance of involving the whole range of stakeholders in formulation of recommendations. CONCLUSIONS: Different stakeholders agree in the majority of research and strategic (eg, prevention, personalized approach) priorities for pediatric asthma. Stakeholder diversity is crucial for highlighting divergent issues that future guidelines should consider.

Perspectives on Living with Chronic Spontaneous Urticaria: From Onset through Diagnosis and Disease Management in the US.

Chronic spontaneous urticaria is challenging to manage and substantially affects quality of life. This US, non-interventional qualitative study examined patients' clinical journeys and emotional burden from symptom onset through disease management. Chronic spontaneous urticaria patients participated in interviews and completed diaries focusing on disease and treatment history/perspectives, impact on personal/family life, and relationships with physicians/other healthcare providers. Physicians were interviewed about their views on disease management and patient care. Twenty-five patients, previously or currently receiving chronic spontaneous urticaria treatment(s), and 12 physicians participated. Key stages following symptom onset were identified: Crisis (associated with feelings of torment/disorientation/shock); Searching for answers (puzzlement/frustration/anxiety); Diagnosis (relief/satisfaction/fear/isolation); and Disease management (frustration/hope/powerlessness). Findings revealed patients' perceptions and experiences of chronic spontaneous urticaria, including living with a 'skinemy', experiencing their 'own personal hell' and feeling 'like an experiment'. Awareness of unmet needs in patient care/management identified in this study may ultimately improve patient support and enhance physicians' understanding of disease burden.

A Patient-Centered Description of Severe Asthma: Patient Understanding Leading to Assessment for a Severe Asthma Referral (PULSAR)

BACKGROUND: Although severe asthma can be life-threatening, many patients are unaware they have this condition. OBJECTIVES: Patient Understanding Leading to Assessment for a Severe Asthma Referral (PULSAR) is a novel, multidisciplinary working group aiming to develop and disseminate a global, patient-centered description of severe asthma to improve patient understanding of severe asthma and effect a change in patient behavior whereby patients are encouraged to visit their healthcare professional, when appropriate. METHODS: Current definitions from patient organization websites, asthma guidelines, and medication information for key asthma drugs were assessed and informed a multidisciplinary working group, convened to identify common concepts and terminology used to define severe asthma. A patient-centered description of severe asthma and patient checklist were drafted based on working-group discussions and reviewed by an external behavioral scientist for patient understanding and relevance. These were tested using an online US/Canadian survey. RESULTS: The patient-centered description of severe asthma and patient checklist were reviewed and re-drafted by the authors. The text was simplified following the behavioral-scientist review. The survey (n = 153) included 105 patients with severe asthma. Of those with severe asthma, 92.2% of patients reported that the description was consistent with their experiences of severe asthma and 92.6% of patients reported that the PULSAR initiative would encourage them to visit their healthcare provider. CONCLUSION: A patient-centered description of severe asthma has been developed and tested using patients with severe asthma; this description will allow patients to assess whether they might have severe asthma and prompt them to visit their healthcare provider, if appropriate.

Severe asthma is a serious form of asthma. It can be harmful to your health and affect the way you live your life. Some patients do not know that they have severe asthma or visit their doctor and ask for help. A new group, called Patient Understanding Leading to Assessment for a Severe Asthma Referral (PULSAR), would like to help patients understand their asthma symptoms. They have developed a description of severe asthma and a checklist. These may help patients decide if their symptoms require a visit to the doctor.The PULSAR description and checklist were developed in four parts. Part 1 looked at if patients and doctors/nurses defined severe asthma in the same way. Results showed that patients defined severe asthma using symptoms and doctors defined severe asthma using treatments. In Part 2, patients, patient advocacy group members, nurses, doctors, specialists, and a scientist talked about the ways severe asthma were described in Part 1. The group agreed on a set of words to describe severe asthma. These words were then used in the PULSAR description and checklist. In Part 3, a behavioral scientist reviewed the PULSAR description and checklist. They said that simple language would make it easy to understand. In Part 4, patients with severe asthma were asked what they thought about the description and checklist using an online survey. The survey showed that almost all patients understood the description and checklist. Many patients said that the description and checklist encouraged them to see a doctor.A new description of severe asthma and checklist have been developed by PULSAR. Testing shows that they should encourage patients to visit their doctor when needed. This may help patients understand their symptoms and help doctors make the correct diagnosis. This should help patients get the support and treatment they need.

A Charter to Improve Patient Care in Severe Asthma.

Severe asthma is a subtype of asthma that is difficult to treat and control. By conservative estimates, severe asthma affects approximately 5-10% of patients with asthma worldwide. Severe asthma impairs patients' health-related quality of life, and patients are at risk of life-threatening asthma attacks. Severe asthma also accounts for the majority of health care expenditures associated with asthma. Guidelines recommend that patients with severe asthma be referred to a specialist respiratory team for correct diagnosis and expert management. This is particularly important to ensure that they have access to newly available biologic treatments. However, many patients with severe asthma can suffer multiple asthma attacks and wait several years before they are referred for specialist care. As global patient advocates, we believe it is essential to raise awareness and understanding for patients, caregivers, health care professionals, and the public about the substantial impact of severe asthma and to create opportunities for improving patient care. Patients should be empowered to live a life free of symptoms and the adverse effects of traditional medications (e.g., oral corticosteroids), reducing hospital visits and emergency care, the loss of school and work days, and the constraints placed on their daily lives. Here we provide a Patient Charter for severe asthma, consisting of six core principles, to mobilize national governments, health care providers, payer policymakers, lung health industry partners, and patients/caregivers to address the unmet need and burden in severe asthma and ultimately work together to deliver meaningful improvements in care. FUNDING: AstraZeneca.

What do patients want from their asthma care doctors?

One of the most important causes of asthma morbidity, hospital admissions, and death is non-adherence to prescribed therapy. It is generally assumed that adherence rates can be increased with asthma education, although well conducted studies have not always supported this assumption. Education can be achieved, or can fail, in many ways and no two patients have the same needs or perceived needs. In order to better understand what children with asthma and their parents or caregivers would desire as support from their physician providers, we conducted a survey of nearly 1000 parents of asthmatic children affiliated with the Asthma and Allergy Network. Most of those who responded wanted convenient access to their doctor, more time spent in office visits with greater attention paid to the patient, help in navigating insurance and prescription costs and paperwork, and a partnership in developing care plans. Although most patients were well insured for medical coverage (not a given in the USA), half were dissatisfied with their self-reported asthma control, many were concerned about medication side effects, 60% were not cared for by an asthma specialist, and nearly half did not have an asthma action plan. These results are consistent with data from other published studies and suggest that we still can do much more to meet the needs of children for whom we provide asthma care.