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1.
J Clin Nurs ; 33(1): 162-177, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37140186

RESUMO

AIMS AND OBJECTIVES: In this study, we aimed to characterize the impact of long COVID on quality of life and approaches to symptom management among Black American adults. BACKGROUND: As a novel condition, qualitative evidence concerning long COVID symptoms and their impact on quality of life can inform the refinement of diagnostic criteria and care plans. However, the underrepresentation of Black Americans in long COVID research is a barrier to achieving equitable care for all long COVID patients. DESIGN: We employed an interpretive description study design. METHODS: We recruited a convenience sample of 15 Black American adults with long COVID. We analysed the anonymized transcripts from race-concordant, semi-structured interviews using an inductive, thematic analysis approach. We followed the SRQR reporting guidelines. RESULTS: We identified four themes: (1) The impact of long COVID symptoms on personal identity and pre-existing conditions; (2) Self-management strategies for long COVID symptoms; (3) Social determinants of health and symptom management; and (4) Effects on interpersonal relationships. CONCLUSION: Findings demonstrate the comprehensive ramifications of long COVID on the lives of Black American adults. Results also articulate how pre-existing conditions, social risk factors, distrust due to systemic racism, and the nature of interpersonal relationships can complicate symptom management. RELEVANCE TO CLINICAL PRACTICE: Care approaches that support access to and implementation of integrative therapies may be best suited to meet the needs of long COVID patients. Clinicians should also prioritize eliminating patient exposure to discrimination, implicit bias, and microaggressions. This is of particular concern for long COVID patients who have symptoms that are difficult to objectively quantify, such as pain and fatigue. NO PATIENT OR PUBLIC CONTRIBUTION: While patient perspectives and experiences were the focus of this study, patients were not involved with the design or conduct of the study, data analysis or interpretation, or writing the manuscript.


Assuntos
Negro ou Afro-Americano , COVID-19 , Síndrome de COVID-19 Pós-Aguda , Adulto , Humanos , Síndrome de COVID-19 Pós-Aguda/epidemiologia , Pesquisa Qualitativa , Qualidade de Vida
2.
Lupus ; 33(1): 58-67, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38047461

RESUMO

In response to racial inequities in systemic lupus erythematosus (SLE), we aimed to identify practical recommendations for increasing engagement and inclusion of Black adults in SLE research. We used a qualitative, interpretive description approach and recruited 30 Black adults diagnosed with SLE in Michigan to participate in semi-structured interviews. Theme development focused on what factors influenced research perceptions and how research did not meet participant needs and expectations. We developed five main themes: (1) Ethical and equitable research. Participants shared how the impacts of past and present-day racism impacted their willingness to participate in research. (2) Trusting researchers to conduct studies and translate findings to health care. Participants had concerns related to researcher intentions and expressed the importance of communicating research outcomes to participants and translating findings to health care. (3) Drug trial beneficence. When considering drug trials, several people did not consider the potential benefits worth the risk of side effects, and some said they would need to consult with their doctor before agreeing to participate. (4) Altruism. Participants explained how the desire to help others was a motivating factor for participating in research and donating biological samples. (5) Research priorities. Participants described a need for better treatments that value their overall health and well-being. Findings indicate that researchers can center the perspectives of Black people with SLE across the research life cycle-beyond a focus on adequate racial diversity among study participants.


Assuntos
Lúpus Eritematoso Sistêmico , Adulto , Humanos , Lúpus Eritematoso Sistêmico/diagnóstico , Pesquisa Qualitativa , População Negra , Atenção à Saúde , Confiança
3.
JAMA Netw Open ; 6(10): e2340688, 2023 10 02.
Artigo em Inglês | MEDLINE | ID: mdl-37906190

RESUMO

Importance: Racial inequities in incidence, morbidity, and mortality are a defining feature of systemic lupus erythematosus (SLE). Health care systems are integral to addressing these inequities. However, qualitative evidence that highlights Black SLE care experiences is limited. Objective: To identify opportunities for improving SLE care based on the experiences and perspectives of Black adults with SLE. Design, Setting, and Participants: In this qualitative study, an interpretive description approach was used and data were analyzed using inductive thematic analysis. Semistructured interviews with Black adults in Michigan who were diagnosed with SLE were conducted. Interviews occurred from November 2, 2021, to July 19, 2022, and data analysis occurred from May 6, 2022, to April 12, 2023. Main Outcomes and Measures: Deidentified transcripts from the interviews were analyzed to develop themes that focused on opportunities to improve quality of care and symptom management. Results: The participants included 30 Black adults with SLE (97% women; mean age, 41 years; range, 18-65 years). Four main themes were identified: (1) awareness of SLE signs and symptoms before diagnosis (participants emphasized delays in diagnosis and how knowledge concerning SLE could be limited in their families and communities); (2) patient-clinician interactions (participants faced discrimination in health care settings and talked about the value of coordinated and supportive health care teams); (3) medication adherence and health effects (participants experienced a range of adverse effects from medications that treat SLE and described how monitoring medication use and efficacy could inform tailored care approaches); and (4) comprehensive care plans after diagnosis (participants reported persistent pain and other symptoms despite treatment). In the context of disease management, participants emphasized the importance of behavioral change and the negative impact of social risk factors. Conclusions and Relevance: The findings of this qualitative study suggest how limited information about SLE, experiences of racism, treatment regimens, and social risk factors may affect Black people with SLE. Future research should further engage and include Black communities within the context of treatment and intervention development to reduce racial inequities.


Assuntos
População Negra , Gerenciamento Clínico , Equidade em Saúde , Lúpus Eritematoso Sistêmico , Determinantes Sociais da Saúde , Racismo Sistêmico , Adulto , Feminino , Humanos , Masculino , Análise de Dados , Lúpus Eritematoso Sistêmico/diagnóstico , Lúpus Eritematoso Sistêmico/terapia , Pesquisa Qualitativa , Adolescente , Adulto Jovem , Pessoa de Meia-Idade , Idoso , Racismo Sistêmico/etnologia , Determinantes Sociais da Saúde/etnologia , Educação em Saúde , Comportamentos Relacionados com a Saúde/etnologia
4.
Clin Transl Gastroenterol ; 9(8): 177, 2018 09 04.
Artigo em Inglês | MEDLINE | ID: mdl-30177700

RESUMO

INTRODUCTION: Colorectal cancer (CRC) is a common but largely preventable disease with suboptimal screening rates despite national guidelines to screen individuals age 50-75. Single-component interventions aimed to improve screening uptake only modestly improve rates; data suggest that multi-modal approaches may be more effective. METHODS: We designed, implemented, and evaluated the impact of a multi-modal intervention on CRC screening uptake among unscreened patients in a large managed care population. Patient-level components included a mailed letter with education about screening options and pre-colonoscopy telephone counseling. For providers, we facilitated communication of screening test results and work-flow for abnormal results. System-level modifications included establishment of a patient navigator, expedited work-up for abnormal results, and stream-lined colonoscopy scheduling. We measured the rate of screening uptake overall, screening uptake by modality, change in the proportion of the population screened, and positive fecal immunochemical test (FIT) follow-up rates in the 1-year study period. RESULTS: There were 5093 patients in the intervention cohort. Of these, 33.2% participated in FIT or colonoscopy screening within 1 year of the mailing. A total of 1078 (21.2%) participants completed a FIT and 611 (12.0%) completed a screening colonoscopy. The screening rate in the managed care population increased from 65.1 to 76.6%. Fifty-nine patients (5.5%) had a positive FIT, of which 30 (50.8%) completed a diagnostic colonoscopy. CONCLUSION: Multi-modal interventions can result in substantial improvement in CRC screening uptake in large and diverse managed care populations. TRANSLATIONAL IMPACT: Health systems should shift their focus from single-level to multi-level interventions when addressing barriers to CRC screening.


Assuntos
Neoplasias Colorretais/diagnóstico , Detecção Precoce de Câncer/normas , Programas de Assistência Gerenciada/organização & administração , Programas de Assistência Gerenciada/normas , Programas de Rastreamento/normas , Melhoria de Qualidade , Idoso , Agendamento de Consultas , Colonoscopia/estatística & dados numéricos , DNA de Neoplasias/análise , Detecção Precoce de Câncer/métodos , Detecção Precoce de Câncer/estatística & dados numéricos , Fezes/química , Feminino , Humanos , Imunoquímica/estatística & dados numéricos , Comunicação Interdisciplinar , Masculino , Programas de Rastreamento/métodos , Programas de Rastreamento/estatística & dados numéricos , Pessoa de Meia-Idade , Educação de Pacientes como Assunto/métodos , Navegação de Pacientes , Sistemas de Alerta , Telefone , Estados Unidos
5.
Int J Radiat Oncol Biol Phys ; 63(2): 622-33, 2005 Oct 01.
Artigo em Inglês | MEDLINE | ID: mdl-16168854

RESUMO

PURPOSE: To present a comparison of the accuracy of two commercial electron beam treatment planning systems: one uses a Monte Carlo algorithm and the other uses a pencil beam model for dose calculations. METHODS AND MATERIALS: For the same inhomogeneous phantoms and incident beams, measured dose distributions are compared with those predicted by the commercial treatment planning systems at different source-to-surface distances (SSDs). The accuracy of the pencil beam system for monitor unit calculations is also tested at various SSDs. Beam energies of 6-20 MeV are used. RESULTS: The pencil beam model shows some serious limitations in predicting hot and cold spots in inhomogeneous phantoms for small low- or high-density inhomogeneities, especially for low-energy electron beams, such as 9 MeV. Errors (>10%) are seen in predicting high- and low-dose variations for three-dimensional inhomogeneous phantoms. The Monte Carlo calculated results generally agree much better with measurements. CONCLUSIONS: The accuracy of the pencil beam calculations is difficult to predict because it depends on both the inhomogeneity geometry and location. The pencil beam calculations using CADPLAN result in large errors in phantoms containing three-dimensional type inhomogeneities. The Monte Carlo method in Theraplan Plus dose calculation module is shown to be more robust in accurately predicting dose distributions and monitor units under the tested conditions.


Assuntos
Algoritmos , Elétrons/uso terapêutico , Método de Monte Carlo , Imagens de Fantasmas , Planejamento da Radioterapia Assistida por Computador/métodos , Ar , Osso e Ossos , Pulmão , Dosagem Radioterapêutica , Coluna Vertebral , Traqueia , Água
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