"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.

Accelerating Food Allergy Research: Need for a Data Commons.

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.

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.

Atopic Dermatitis in America Study: A Cross-Sectional Study Examining the Prevalence and Disease Burden of Atopic Dermatitis in the US Adult Population.

Population-based estimates on the prevalence of atopic dermatitis in adults vary widely. The objectives of this study were to determine the prevalence of atopic dermatitis in the population of the United States, the distribution of disease severity, and its impact on health-related quality of life. Among 1,278 participating adults, the prevalence (95% confidence interval) of atopic dermatitis was 7.3% (5.9-8.8). Overall, 60.1% (56.1-64.1) of participants were classified as having mild, 28.9% (25.3-32.7) as having moderate, and 11% as having severe (8.6-13.7) disease. Patients with atopic dermatitis and those with more severe disease had higher scores in the dermatology life quality index (mean [standard deviation] for AD patients = 4.71 [6.44] vs. control individuals = 0.97 [2.12]) (P < 0.001) and the hospital anxiety (mean [standard deviation] for AD patients = 7.03 [4.80] vs. control individuals = 4.73 [4.8]) and depression (mean, [standard deviation] for AD patients = 5.83 [4.54] vs. control individuals = 3.62 [3.61]) scales, indicating a worse impact on quality of life and an increased likelihood of anxiety or depression. Based on our prevalence estimates, 16.5 million adults would have a diagnosis of atopic dermatitis, with 6.6 million meeting criteria for moderate to severe disease. Our study confirms the high prevalence and disease burden of atopic dermatitis in this population.

Community opinions regarding oral immunotherapy for food allergies.

BACKGROUND: Food oral immunotherapy (OIT) is a promising but still investigational new therapy for food allergy. OBJECTIVE: We sought to investigate beliefs and opinions among OIT participants and nonparticipants to better understand community awareness of this therapy. METHODS: A 30-question on-line survey was administered to members, website visitors, and social media followers of the Kids with Food Allergy Foundation. Questions inquired about general knowledge and attitudes about OIT, its reported safety and efficacy, complications, insurance coverage, and its Food and Drug Administration (FDA) approval status. RESULTS: Among 1,274 survey respondents, 15.9% had discussed OIT as a treatment option with their allergy provider. Five percent (n = 64) of respondents reported that their child was currently participating in OIT, including 73.4% (n = 47) in a private practice setting. Participants reported varying degrees of being informed about OIT safety (85%), efficacy (46.4% told unrestricted ingestion), risks (relapse 53.4%, eosinophilic esophagitis 3.5%, oral allergy syndrome 10.7%, and failure 56.9%). Significantly fewer participants than nonparticipants agreed that OIT's present safety, efficacy, risks, and approval status would dissuade participation. Significantly fewer participants agreed that OIT should not be offered outside the research setting without definitive proof of both its safety and efficacy. CONCLUSION: In this exploratory study, differences in beliefs and opinions existed between OIT participants and nonparticipants. Among participants, there were also significant differences in beliefs among academic versus nonacademic participants. Accurate and complete information about OIT safety, efficacy, risks, and approval status was not universally conveyed.

A survey study of index food-related allergic reactions and anaphylaxis management.

BACKGROUND: Initial food-allergic reactions are often poorly recognized and under-treated. METHODS: Parents of food-allergic children were invited to complete an online questionnaire, designed with Kids with Food Allergies Foundation, about their children's first food-allergic reactions resulting in urgent medical evaluation. RESULTS: Among 1361 reactions, 76% (95% CI 74-79%) were highly likely to represent anaphylaxis based on NIAID/FAAN criteria. Only 34% (95% CI 31-37%) of these were administered epinephrine. In 56% of these, epinephrine was administered by emergency departments; 20% by parents; 9% by paramedics; 8% by primary care physicians; and 6% by urgent care centers. In 26% of these, epinephrine was given within 15 min of the onset of symptoms; 54% within 30 min; 82% within 1 h; and 93% within 2 h. Factors associated with a decreased likelihood of receiving epinephrine for anaphylaxis included age <12 months, milk and egg triggers, and symptoms of abdominal pain and/or diarrhea. Epinephrine was more likely to be given to asthmatic children and children with peanut or tree nut ingestion prior to event. Post-treatment, 42% of reactions likely to represent anaphylaxis were referred to allergists, 34% prescribed and/or given epinephrine auto-injectors, 17% trained to use epinephrine auto-injectors, and 19% given emergency action plans. Of patients treated with epinephrine, only half (47%) were prescribed epinephrine auto-injectors. CONCLUSIONS: Only one-third of initial food-allergic reactions with symptoms of anaphylaxis were recognized and treated with epinephrine. Fewer than half of patients were referred to allergists. There is still a need to increase education and awareness about food-induced anaphylaxis.

Challenging the one-size-fits-all myth: findings and solutions from a statewide focus group of rural social workers.

Of America's counties, 76% are rural, comprising 83% of U.S. land and 25% of the American population. Yet most child welfare programs are designed to fit the needs of urban and suburban families. This article reviews the unique needs and assets of rural children and families in Texas. It presents recommendations from a focus group for overcoming the inappropriate transfer of urban models to rural communities.