Economic analyses often focus narrowly on individual patients' health care use, while overlooking the growing economic burden of out-of-pocket costs for health care on other family medical and household needs. The aim of this study was to explore intrafamilial trade-offs families make when paying for asthma care. In 2018, we conducted telephone interviews with 59 commercially insured adults who had asthma and/or had a child with asthma. We analyzed data qualitatively via thematic content analysis. Our purposive sample included participants with high-deductible and no/low-deductible health plans. We recruited participants through a national asthma advocacy organization and a large nonprofit regional health plan. Our semistructured interview guide explored domains related to asthma adherence and cost burden, cost management strategies, and trade-offs. Participants reported that they tried to prioritize paying for asthma care, even at the expense of their family's overall financial well-being. When facing conflicting demands, participants described making trade-offs between asthma care and other health and nonmedical needs based on several criteria: (1) short-term needs versus longer term financial health; (2) needs of children over adults; (3) acuity of the condition; (4) effectiveness of treatment; and (5) availability of lower cost alternatives. Our findings suggest that cost-sharing for asthma care often has negative financial consequences for families that traditional, individually focused economic analyses are unlikely to capture. This work highlights the need for patient-centered research to evaluate the impact of health care costs at the family level, holistically measuring short-term and long-term family financial outcomes that extend beyond health care use alone.

BackgroundShared decision-making (SDM), the process of engaging patients in their healthcare decisions, is an integral component of personalized medicine. The use of SDM in real-world allergy and asthma care in the United States (US) is unknown. Cross-sectional surveys of allergists and patients in a US population were conducted to assess the use and perceptions of SDM and SDM tools in real-world allergy and asthma care. MethodsAllergists (N = 101) who were members of the American College of Allergy Asthma & Immunology (ACAAI) and who were also Dynata (a marketing research firm) research partners or in the Allergy & Asthma Network customer database completed an online survey from February–March 2022. Adult patients (N = 110) with asthma, allergy, and/or eczema in the United States who were participants of online research panels hosted by Dynata completed on online survey from February 1–7, 2022. ResultsBased on their own definition, 98% of the allergists reported familiarity with SDM, and 79% reported using it frequently. Allergists reported using SDM with an average of 44% of their patients. The most commonly used tool was the Immunotherapy SDM toolkit (40%); 43% had not used any SDM tool. Among allergists not using SDM or using it infrequently (n = 19), 42% considered it too time-consuming and 37% believed their patients have low health literacy. Of the surveyed patients, 25% reported their provider used SDM “frequently” or “occasionally” when being treated for allergies, asthma, or eczema, and 22% reported using SDM tools with their provider at some point. The most commonly used tool was the Asthma and Allergy Symptom Test (60%). Among patients whose allergists used SDM infrequently or never (n = 56), 70% reported they would be likely to ask their allergist to use SDM more often. ConclusionSurvey responses revealed a disconnect between allergists and patients regarding SDM use. Barriers to SDM are consistent with those across the healthcare industry. Patients clearly expressed their desire for SDM.

Systemic lupus erythematosus (SLE) is a chronic autoimmune disease. The complex relationships between race and ethnicity and social determinants of health (SDOH) in influencing SLE and its course are increasingly appreciated. Multiple SDOH have been strongly associated with lupus incidence and outcomes and contribute to health disparities in lupus. Measures of socioeconomic status, including economic instability, poverty, unemployment, and food insecurity, as well as features of the neighborhood and built environment, including lack of safe and affordable housing, crime, stress, racial segregation, and discrimination, are associated with race and ethnicity in the US and are risk factors for poor outcomes in lupus. In this scientific statement, we aimed to summarize current evidence on the role of SDOH in relation to racial and ethnic disparities in SLE and SLE outcomes, primarily as experienced in the U.S. Lupus Foundation of America's Health Disparities Advisory Panel, comprising 10 health disparity experts, including academic researchers and patients, who met 12 times over the course of 18 months in assembling and reviewing the data for this study. Sources included articles published from 2011 to 2023 in PubMed, Centers for Disease Control and Prevention data, and bibliographies and recommendations. Search terms included lupus, race, ethnicity, and SDOH domains. Data were extracted and synthesized into this scientific statement. Poorer neighborhoods correlate with increased damage, reduced care, and stress-induced lupus flares. Large disparities in health care affordability, accessibility, and acceptability exist in the US, varying by region, insurance status, and racial and minority groups. Preliminary interventions targeted social support, depression, and shared-decision-making, but more research and intervention implementation and evaluation are needed. Disparities in lupus across racial and ethnic groups in the US are driven by SDOH, some of which are more easily remediable than others. A multidimensional and multidisciplinary approach involving various stakeholder groups is needed to address these complex challenges, address these diminish disparities, and improve outcomes.

Many patients have uncontrolled asthma despite available treatments. Most of the new asthma therapies have focused on type 2 (T2) inflammation, leaving an unmet need for innovative research into mechanisms of asthma beyond T2 and immunity. An international group of investigators developed the International Collaborative Asthma Network (ICAN) with the goal of sharing innovative research on disease mechanisms, developing new technologies and therapies, organising pilot studies and engaging early-stage career investigators from across the world. This report describes the purpose, development and outcomes of the first ICAN forum. Abstracts were solicited from interdisciplinary early-stage career investigators with innovative ideas beyond T2 inflammation for asthma and were selected for presentation at the forum. Breakout sessions were conducted to discuss innovation, collaboration and research translation. The abstracts were categorised into: 1) general omics and big data analysis; 2) lung-brain axis and airway neurology; 3) sex differences; 4) paediatric asthma; 5) new therapeutic targets inspired by airway epithelial biology; 6) new therapeutics targeting airway and circulating immune mediators; and 7) lung anatomy, physiology and imaging. Discussions revealed that research groups are looking for opportunities to further their findings using larger scale collaboration and the ability to translate their in vitro findings into clinical treatment. Through ICAN, teams that included interdisciplinary early-stage career investigators discussed innovation, collaboration and translation in asthma and severe asthma research. With a combination of fresh ideas and energetic, collaborative, global participation, ICAN has laid a firm foundation and model for future collaborative global asthma research.

BackgroundIn 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.MethodsThe 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.ResultsSessions 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.ConclusionsBPLM 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.

Food allergy is a significant health problem affecting approximately 8% of children and 11% of adults in the United States. It exhibits all the characteristics of a "complex" genetic trait; therefore, it is necessary to look at very large numbers of patients, far more than exist at any single organization, to eliminate gaps in the current understanding of this complex chronic disorder. Advances may be achieved by bringing together food allergy data from large numbers of patients into a Data Commons, a secure and efficient platform for researchers, comprising standardized data, available in a common interface for download and/or analysis, in accordance with the FAIR (Findable, Accessible, Interoperable, and Reusable) principles. Prior data commons initiatives indicate that research community consensus and support, formal food allergy ontology, data standards, an accepted platform and data management tools, an agreed upon infrastructure, and trusted governance are the foundation of any successful data commons. In this article, we will present the justification for the creation of a food allergy data commons and describe the core principles that can make it successful and sustainable.

Patients with CSU cycle through visits with multiple clinicians (HCPs) without relief due to lack of diagnosis or inadequate treatments. We evaluated the impact of online continuing education (CME) on HCPs’ ability to address patient needs by optimizing CSU diagnosis and antihistamine dosing.

Dear Editor, Family caregivers play an important role in the wellbeing of individuals with chronic health conditions but can experience psychological, behavioural and physiological effects that can impact their health.1–3 Atopic dermatitis (AD) (also known as eczema) is the most burdensome skin condition worldwide.4 Because it is important to understand the range and nuances of caregiver impact, we sought to qualitatively summarize caregiver perspectives, an area that is understudied compared with patient impact in AD.5 Data are taken from an international survey developed by patient advocacy groups and fielded online in 2019 as part of a US Food and Drug Administration patient‐focused drug development initiative. After scoring the impact of caring for someone with AD, participants were asked to provide additional comments in free‐text form on how AD caregiving has impacted their life. Quantitative results on caregiving are published in a companion research letter (Kim et al., this issue of BJD6). Using an iterative, consensus‐building process, we identified themes and developed a codebook with definitions, typical and atypical exemplars, and exclusions.7 Codes were tested for interrater reliability and then applied in dyads.

Dear Editor, Family caregivers are essential to the wellbeing of individuals with chronic health conditions. However, they often experience psychological, behavioural and physiological effects that can contribute to impaired immune system function, coronary heart disease and even increased risk of mortality.1,2 Prior studies on caregiving in atopic dermatitis (AD) have focused on specific domains and caregivers of children with AD.3,4 We sought to examine the impact of caring for both paediatric and adult patients with AD across multiple domains using data from a survey developed by patient advocacy groups as part of a Food and Drug Administration patient‐focused drug development initiative fielded online in 2019. Patient responses and qualitative analyses from open‐ended caregiver responses are published separately.5,6 We examined two measures of caregiver impact: (i) an overall impact score in response to the question ‘On a scale of 1 to 5 (with 1 being ‘no impact’ and 5 being ‘significant impact’), how much have the person’s AD symptoms negatively impacted your own life over the past month?’; and (ii) subdomain impact scores using the same question focused on each of 13 life subdomains (sleep, diet, physical activity, life decisions, family dynamics, family responsibilities, leisure activities, ability to concentrate, stress, self‐confidence, work responsibilities, social relationships and intimate relationships). We then used ordinal regression models to evaluate how patient characteristics, comorbid conditions, severity of AD and treatment characteristics associated with the overall impact of AD for caregivers (Table 1). After checking for multicollinearity, variables found to be significant (P < 0·05) in univariable models were included in a multivariable model.