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1.
ACR Open Rheumatol ; 5(9): 454-464, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-37531095

RESUMO

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.

2.
JAMA Dermatol ; 158(8): 887-892, 2022 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-35767267

RESUMO

Importance: Atopic dermatitis (AD) is long term and burdensome. Studies investigating disease burden in adults are limited in scope with gaps in understanding of the adult patient lived experience. Objective: To describe the multidimensional burden of AD among mainly US adults. Design, Setting, and Participants: This survey study for an externally led patient-focused drug development meeting with the US Food and Drug Administration on adult patients with AD was conducted between August 1, 2019, and October 11, 2019. Data were analyzed betwean March 26, 2021, and June 29, 2021. Main Outcomes and Measures: We used multivariable ordinal regression to assess associations between demographic and clinical variables and patient-reported overall AD impact scores (ordinal scale from 1 [no impact] to 5 [significant impact]). Results: Among 1065 survey respondents, 114 (11%) were aged 18 to 24 years, 235 (22%) were 25 to 34 years, 242 (23%) were 35 to 50 years, 288 (27%) were 51 to 64 years, and 186 (17%) were aged 65 years or older; 881 (83%) were women. Four hundred eighty-nine (46%) participants reported low-moderate AD impact scores (2-3), 544 (51%) reported high-significant impact scores (4-5), whereas 32 (3%) reported no association of AD with disease burden (impact score, 1). Variables strongly associated with overall impact scores were current AD severity (moderate: OR, 4.13; 95% CI, 2.94-5.79; severe: OR, 13.63; 95% CI, 8.65-21.50 vs mild), and time spent managing AD (11-20 hours: OR, 2.67; 95% CI, 1.77-4.03, ≥21 hours: OR, 5.34; 95% CI, 3.22-8.85, vs <5 hours). Conclusions and Relevance: In this survey study, AD severity and time spent managing symptoms showed the strongest associations with disease burden. This analysis highlights the multidimensional burden of AD in adults and emphasizes the need for more effective treatment strategies that reduce the time patients spend managing their AD.


Assuntos
Dermatite Atópica , Adulto , Efeitos Psicossociais da Doença , Dermatite Atópica/tratamento farmacológico , Feminino , Humanos , Masculino , Qualidade de Vida , Índice de Gravidade de Doença , Inquéritos e Questionários
3.
J Allergy Clin Immunol Pract ; 8(10): 3371-3377.e1, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32980585

RESUMO

BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic has demonstrated significantly worse outcomes for minority (black and Hispanic) individuals. Understanding the reasons for COVID-19-related disparities among patients with asthma has important public health implications. OBJECTIVE: To determine factors contributing to health disparities in those with asthma during the COVID-19 pandemic. METHODS: An anonymous survey was sent through social media to adult patients with asthma, and a separate survey was sent to physicians who provide asthma care. The patient survey addressed demographic information including socioeconomic status, asthma control, and attitudes/health behaviors during COVID-19. RESULTS: A total of 1171 patients (10.1% minority individuals) and 225 physicians completed the survey. Minority patients were more likely to have been affected by COVID-19 (eg, became unemployed, lived in a community with high COVID-19 cases). They had worse asthma control (increased emergency visits for asthma, lower Asthma Control Test score), were more likely to live in urban areas, and had a lower household income. Initial differences in attitudes and health behaviors disappeared after controlling for baseline demographic features. Institutional racism was demonstrated by findings that minority individuals were less likely to have a primary care physician, had more trouble affording asthma medications due to COVID-19, and were more likely to have lost health insurance because of COVID-19, and that 25% of physicians found it more challenging to care for black individuals with asthma during COVID-19. CONCLUSIONS: Differences in socioeconomic status and the effects of institutional racism, but not health behaviors, sources of information, or attitudes, are playing a role in disparities seen for patients with asthma during COVID-19.


Assuntos
Antiasmáticos/uso terapêutico , Asma/tratamento farmacológico , Infecções por Coronavirus/epidemiologia , Disparidades nos Níveis de Saúde , Disparidades em Assistência à Saúde/etnologia , Pneumonia Viral/epidemiologia , Racismo , Desemprego/estatística & dados numéricos , Adulto , Negro ou Afro-Americano/estatística & dados numéricos , Asma/fisiopatologia , Betacoronavirus , COVID-19 , Infecções por Coronavirus/etnologia , Feminino , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Hispânico ou Latino/estatística & dados numéricos , Humanos , Masculino , Pessoas sem Cobertura de Seguro de Saúde/etnologia , Pandemias , Médicos de Atenção Primária , Pneumonia Viral/etnologia , Pneumologistas , SARS-CoV-2 , Índice de Gravidade de Doença , Classe Social , Inquéritos e Questionários , Estados Unidos/epidemiologia , População Branca/estatística & dados numéricos
4.
Acta Derm Venereol ; 99(12): 1091-1098, 2019 Nov 01.
Artigo em Inglês | MEDLINE | ID: mdl-31396637

RESUMO

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.


Assuntos
Adaptação Psicológica , Urticária Crônica/psicologia , Efeitos Psicossociais da Doença , Qualidade de Vida , Adulto , Idoso , Urticária Crônica/diagnóstico , Urticária Crônica/terapia , Emoções , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Prognóstico , Pesquisa Qualitativa , Fatores de Tempo , Estados Unidos , Adulto Jovem
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