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BACKGROUND: The COVID-19 pandemic resulted in rapid changes in how patient care was provided, particularly through the expansion of telehealth and audio-only phone-based care. OBJECTIVE: The goal of this study was to evaluate inequities in video and audio-only care during various time points including the initial wave of the COVID-19 pandemic, later stages of the pandemic, and a historical control. We sought to understand the characteristics of care during this time for a variety of different groups of patients that may experience health care inequities. METHODS: We conducted a retrospective analysis of electronic health record (EHR) data from encounters from 34 family medicine and internal medicine primary care clinics in a large, Midwestern health system, using a repeated cross-sectional, observational study design. These data included patient demographic data, as well as encounter, diagnosis, and procedure records. Data were obtained for all in-person and telehealth encounters (including audio-only phone-based care) that occurred during 3 separate time periods: an initial COVID-19 period (T2: March 16, 2020, to May 3, 2020), a later COVID-19 period (T3: May 4, 2020, to September 30, 2020), and a historical control period from the previous year (T1: March 16, 2019, to September 30, 2019). Primary analysis focused on the status of each encounter in terms of whether it was completed as scheduled, it was canceled, or the patient missed the appointment. A secondary analysis was performed to evaluate the likelihood of an encounter being completed based on visit modality (phone, video, in-person). RESULTS: In total, there were 938,040 scheduled encounters during the 3 time periods, with 178,747 unique patients, that were included for analysis. Patients with completed encounters were more likely to be younger than 65 years old (71.8%-74.1%), be female (58.8%-61.8%), be White (75.6%-76.7%), and have no significant comorbidities (63.2%-66.8%) or disabilities (53.2%-61.1%) in all time periods than those who had only canceled or missed encounters. Effects on different subpopulations are discussed herein. CONCLUSIONS: Findings from this study demonstrate that primary care utilization across delivery modalities (in person, video, and phone) was not equivalent across all groups before and during the COVID-19 pandemic and different groups were differentially impacted at different points. Understanding how different groups of patients responded to these rapid changes and how health care inequities may have been affected is an important step in better understanding implementation strategies for digital solutions in the future.
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Acessibilidade aos Serviços de Saúde , Atenção Primária à Saúde , Telemedicina , Idoso , Feminino , Humanos , COVID-19/epidemiologia , Estudos Transversais , Pandemias , Estudos Retrospectivos , Atenção à SaúdeRESUMO
BACKGROUND: Virtual care expanded rapidly during the COVID-19 pandemic, and how this shift affected healthcare disparities among subgroups of patients is of concern. Racial and ethnic minorities, older adults, individuals with less education, and lower-income households have lower rates of home broadband, smartphone ownership, and patient portal adoption, which may directly affect access to virtual care. Because primary care is a major access point to healthcare, perspectives of primary care providers are critical to inform the implementation of equitable virtual care. OBJECTIVE: The aim of this mixed methods study was to explore primary care physician experiences and perceptions of barriers and facilitators to equitable virtual care. DESIGN: We used an explanatory sequential mixed methods design, which consists of first collecting and analyzing quantitative survey data, then using those results to inform a qualitative follow-up phase to explain and expand on results. PARTICIPANTS: Primary care physicians in a family medicine department at an academic medical center responded to surveys (n = 38) and participated in interviews (n = 16). APPROACH: Participants completed a survey concerning frequency and preferences about video visits, pros and cons of video visits, communication aspects, and sufficiency of the technology. A purposeful sample of participants completed semi-structured interviews about their virtual care experiences with a focus on equity for subpopulations. KEY RESULTS: The results indicated that physicians have observed equity issues for unique patient populations. The results add to the understanding of nuanced ways in which virtual care can increase and decrease healthcare access for unique populations. Patients with limited English proficiency were particularly affected by inequity in virtual care access. CONCLUSION: Additional research and interventions are needed to improve portal access for those with limited English proficiency. Improvements should focus on health system interventions that expand access without requiring increased patient burden.
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BACKGROUND: The task complexity involved in connecting to telehealth video visits may disproportionately impact health care access in populations already experiencing inequities. Human intermediaries can be a strategy for addressing health care access disparities by acting as technology helpers to reduce the cognitive load demands required to learn and use patient-facing telehealth technologies. OBJECTIVE: We conducted a cognitive load theory-informed pilot intervention involving warm accompaniment telehealth helping sessions with patients at a Federally Qualified Health Center (FQHC). We demonstrate how to design and report recruitment methods, reach, delivery process, and the preliminary impact of a novel equity-focused intervention. METHODS: Early into the COVID-19 pandemic a telehealth helping session was offered to patients at FQHC via phone. Graduate students led the sessions on conducting a telehealth video test run or helping with patient portal log-in. They systematically recorded their recruitment efforts, intervention observations, and daily reflection notes. Following the intervention, we asked the intervention participants to participate in an interview and all patients who had telehealth visits during and 4 weeks before and after the intervention period to complete a survey. Electronic health records were reviewed to assess telehealth visit format changes. Descriptive and inferential statistical analyses of the recruitment records, electronic health record data, and surveys were performed. Through integrative analysis, we developed process-related themes and recommendations for future equity-focused telehealth interventions. RESULTS: Of the 239 eligible patients, 34 (14.2%) completed the intervention and 3 (1.2%) completed subsequent interviews. The intervention participants who completed the survey (n=15) had lower education and less technological experience than the nonintervention survey participants (n=113). We identified 3 helping strategies for cognitive load reduction: providing step-by-step guidance for configuring and learning, building rapport to create confidence while problem-solving, and being on the same page to counter informational distractions. Intervention participants reported increased understanding but found that learning the video visit software was more difficult than nonintervention participants. A comparison of visit experiences did not find differences in difficulty (cognitive load measure) using telehealth-related technologies, changes to visit modality, or reported technical problems during the visit. However, the intervention participants were significantly less satisfied with the video visits. CONCLUSIONS: Although a limited number of people participated in the intervention, it may have reached individuals more likely to need technology assistance. We postulate that significant differences between intervention and nonintervention participants were rooted in baseline differences between the groups' education level, technology experience, and technology use frequency; however, small sample sizes limit conclusions. The barriers encountered during the intervention suggest that patients at FQHC may require both improved access to web-based technologies and human intermediary support to make telehealth video visits feasible. Future large, randomized, equity-focused studies should investigate blended strategies to facilitate video visit access.
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COVID-19 , Telemedicina , Humanos , Estados Unidos , Pandemias , Projetos Piloto , Estudantes , CogniçãoRESUMO
OBJECTIVES: There is growing attention to health equity in health informatics research. However, the literature lacks a comprehensive framework outlining critical considerations for health informatics research with marginalized groups. METHODS: Literature review and experiences from nine equity-focused health informatics conducted in the United States and Canada. Studies focus on disparities related to age, disability or chronic illness, gender/sex, place of residence (rural/urban), race/ethnicity, sexual orientation, and socioeconomic status. RESULTS: We found four key equity-related methodological considerations. To assist informaticists in addressing equity, we contribute a novel framework to synthesize these four considerations: PRAXIS (Participation and Representation, Appropriate methods and interventions, conteXtualization and structural competence, Investigation of Systematic differences). Participation and representation refers to the necessity for meaningful participation of marginalized groups in research, to elevate the voices of marginalized people, and to represent marginalized people as they are comfortable (e.g., asset-based versus deficit-based). Appropriate methods and interventions mean targeting methods, instruments, and interventions to reach and engage marginalized people. Contextualization and structural competence mean avoiding individualization of systematic disparities and targeting social conditions that (re-)produce inequities. Investigation of systematic differences highlights that experiences of people marginalized according to specific traits differ from those not so marginalized, and thus encourages studying the specificity of these differences and investigating and preventing intervention-generated inequality. We outline guidance for operationalizing these considerations at four research stages. CONCLUSIONS: This framework can assist informaticists in systematically addressing these considerations in their research in four research stages: project initiation; sampling and recruitment; data collection; and data analysis. We encourage others to use these insights from multiple studies to advance health equity in informatics.
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Equidade em Saúde , Informática Médica , Humanos , Feminino , Masculino , Coleta de Dados , Análise de Dados , CanadáRESUMO
Prenatal detection of structural variants of uncertain significance, including copy number variants (CNV), challenges genetic counseling, and creates ambiguity for expectant parents. In Duchenne muscular dystrophy, variant classification and phenotypic severity of CNVs are currently assessed by familial segregation, prediction of the effect on the reading frame, and precedent data. Delineation of pathogenicity by familial segregation is limited by time and suitable family members, whereas analytical tools can rapidly delineate potential consequences of variants. We identified a duplication of uncertain significance encompassing a portion of the dystrophin gene (DMD) in an unaffected mother and her male fetus. Using long-read whole genome sequencing and alignment of short reads, we rapidly defined the precise breakpoints of this variant in DMD and could provide timely counseling. The benign nature of the variant was substantiated, more slowly, by familial segregation to a healthy maternal uncle. We find long-read whole genome sequencing of clinical utility in a prenatal setting for accurate and rapid characterization of structural variants, specifically a duplication involving DMD.
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Variações do Número de Cópias de DNA , Distrofina/genética , Testes Genéticos/métodos , Distrofia Muscular de Duchenne/diagnóstico , Distrofia Muscular de Duchenne/genética , Diagnóstico Pré-Natal/métodos , Adulto , Pontos de Quebra do Cromossomo , Duplicação Cromossômica , Cromossomos Humanos X , Hibridização Genômica Comparativa , Éxons , Feminino , Estudos de Associação Genética/métodos , Predisposição Genética para Doença , Humanos , Masculino , Linhagem , Gravidez , Análise de Sequência de DNARESUMO
PURPOSE: Pelvic radiotherapy (PRT) is known to adversely affect bowel function (BF) and patient well-being. This study characterized long-term BF and evaluated quality of life (QOL) in patients receiving PRT. METHODS: Data from 252 patients were compiled from two North Central Cancer Treatment Group prospective studies, which included assessment of BF and QOL by the BF questionnaire (BFQ) and Uniscale QOL at baseline and 12 and 24 months after completion of radiotherapy. BFQ scores (sum of symptoms), Uniscale results, adverse-event incidence, and baseline demographic data were compared via t test, χ (2), Fisher exact, Wilcoxon, and correlation methodologies. RESULTS: The total BFQ score was higher than baseline at 12 and 24 months (P < 0.001). More patients had five or more symptoms at 12 months (13 %) and 24 months (10 %) than at baseline (2 %). Symptoms occurring in greater than 20 % of patients at 12 and 24 months were clustering, stool-gas confusion, and urgency. Factors associated with worse BF were female sex, rectal or gynecologic primary tumors, prior anterior resection of the rectum, and 5-fluorouracil chemotherapy. Patients experiencing grade 2 or higher acute toxicity had worse 24-month BF (P values, <.001-.02). Uniscale QOL was not significantly different from baseline at 12 or 24 months, despite worse BFQ scores. CONCLUSIONS: PRT was associated with worse long-term BF. Worse BFQ score was not associated with poorer QOL. Further research to characterize the subset of patients at risk of significant decline in BF is warranted.
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Neoplasias Gastrointestinais/radioterapia , Lesões por Radiação/etiologia , Reto/fisiologia , Reto/efeitos da radiação , Adulto , Idoso , Idoso de 80 Anos ou mais , Ensaios Clínicos Fase III como Assunto , Diarreia/etiologia , Feminino , Glutamina/administração & dosagem , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Multicêntricos como Assunto , Pelve/efeitos da radiação , Estudos Prospectivos , Qualidade de Vida , Lesões por Radiação/fisiopatologia , Radioterapia/efeitos adversos , Ensaios Clínicos Controlados Aleatórios como Assunto , Inquéritos e QuestionáriosRESUMO
Multiple gestations resulting from IVF continue to be a major problem associated with maternal/neonatal morbidity and mortality including preterm labour/delivery, pre-eclampsia and post-partum haemorrhage. A prospective survey at a university IVF clinic evaluated the effect of education and insurance coverage on patients' preferences for single-embryo transfer (SET) versus double-embryo transfer (DET). Patients undergoing IVF treatment from September 2008 to October 2009 were included. The main outcome measure was patients' preference of SET versus DET. Patients were sent an educational handout describing maternal and fetal risks of twin gestation. A total of 163 patients (32.6% response rate) returned the pre- and post-education surveys regarding preferences for SET versus DET based on three different IVF insurance coverage scenarios (no coverage, two cycles covered and unlimited coverage). There were statistically significant differences in the preference for SET before and after education across all insurance scenarios (scenario 1, 42.0% versus 61.1%; scenario 2, 50.6% versus 71.0%; and scenario 3, 61.7% versus 79.6%; P<0.001 for all scenarios). Before education, patients preferred SET more in the unlimited coverage scenario (61.7%) versus no coverage (42.0%; P<0.001). An educational handout and increasing the amount of insurance coverage significantly increased a patient's preference for SET.
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Benefícios do Seguro/economia , Educação de Pacientes como Assunto/métodos , Preferência do Paciente/psicologia , Transferência de Embrião Único/economia , Transferência de Embrião Único/métodos , Adulto , Connecticut , Feminino , Humanos , Preferência do Paciente/economia , Estudos ProspectivosRESUMO
BACKGROUND: Physician values regarding the benefit of continued medical therapy vs colectomy for moderate ulcerative colitis have not been defined. If physicians perceive these states differently than patients, their therapeutic recommendations may not align with patient values. OBJECTIVE: This study aimed to compare physician and patient willingness to trade life years with moderately active ulcerative colitis vs undergoing colectomy. DESIGN: This survey of physicians' and patients' utility values used standardized scenarios for moderately active ulcerative colitis and colectomy. SETTING: The investigation was conducted at a tertiary academic medical center. METHODS: Gastroenterologists, colorectal surgeons, and patients with ulcerative colitis who were either living with moderate disease or were postcolectomy completed the survey. MAIN OUTCOME MEASURES: Utility values were measured by the use of the time trade-off method. RESULTS: We surveyed 17 physicians, 150 postcolectomy patients, and 69 patients with moderate ulcerative colitis. Utility values for ulcerative colitis and colectomy states were (0.87, 0.95), (0.86, 0.92), and (0.91, 0.91). On average, physicians and postcolectomy patients assessed the utility of life with ulcerative colitis more poorly than the postcolectomy state. Patients with moderately active ulcerative colitis who had not undergone colectomy viewed both health states equally. LIMITATIONS: This study was limited by the physician subject sample size. CONCLUSIONS: Patients living with moderate ulcerative colitis value the pre- and postcolectomy states differently than physicians and postcolectomy patients. Recognizing the differences between their own and patients' values may help physicians to better counsel patients preoperatively. In addition, exposure to postcolectomy patients may help those with moderate disease who are weighing the comparative benefits of colectomy.
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Atitude do Pessoal de Saúde , Atitude Frente a Saúde , Colite Ulcerativa/terapia , Adulto , Idoso , Idoso de 80 Anos ou mais , Colectomia , Colite Ulcerativa/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Médicos , Qualidade de Vida , Anos de Vida Ajustados por Qualidade de VidaRESUMO
The human epidermal growth factor receptor (Her) family of receptor tyrosine kinases includes Her-1, Her-2, and Her-3. The overexpression of Her-1 and Her-2 have been reported previously in surface epithelial ovarian cancer. Although up to one-third of ovarian carcinomas have been found to have amplification or overexpression of Her-2, responses to trastuzumab therapy in these patients have been disappointing. In this study, we examined Her-1, Her-2, and Her- 3 protein expression as well as the frequency of Her-2 amplification in a series of 103 high-grade, advanced-stage (FIGO stage III or IV) ovarian surface epithelial carcinomas. Immunohistochemical staining using commercially available antibodies against Her-1-3 and fluorescence in situ hybridization (FISH) using probes against Her-2 and chromosome 17 centromere (CEP) were performed on a tissue microarray containing cores of tumor from 103 surface epithelial carcinomas (85 serous, 6 mixed surface epithelial, 5 clear cell, 3 endometrioid, 3 undifferentiated, 1 mucinous). Nine of 99 (9.1%) tumors were positive for Her-1 expression and 5 of 102 (4.9%) tumors were positive for Her-2 expression, with 1 showing strong immunoreactivity. None of the Her-1 positive tumors exhibited Her-2 immunoreactivity. There was no correlation between Her-1 or Her-2 expression and survival. Using Her-2:centromere fluorescence ratios of 2.0 or 1.5 as cutoffs in assessment of Her-2 amplification, 8 of 75 (10.7%) and 25 of 75 (33.3%) tumors, respectively, showed Her-2 amplification. Two of eight tumors that showed higher level (>2) Her-2 amplification by FISH also were positive for Her-2 by immunohistochemistry. Only 3 of 103 tumors expressed Her-3. Immunoreactivity for Her-1 and Her-2 was less frequently observed in this series than has been previously reported. The strong correlation between Her-2 immunostaining and amplification characteristic of breast carcinoma is not seen in ovarian carcinoma. These results indicated that few patients with ovarian carcinoma have tumors that would benefit from therapy targeted specifically against Her-1, Her-2, or Her-3.
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Biomarcadores Tumorais/análise , Receptores ErbB/biossíntese , Neoplasias Ovarianas/metabolismo , Receptor ErbB-2/biossíntese , Receptor ErbB-3/biossíntese , Centrômero , Cromossomos Humanos Par 17 , Feminino , Amplificação de Genes , Humanos , Imuno-Histoquímica , Hibridização in Situ Fluorescente , Pessoa de Meia-Idade , Estadiamento de Neoplasias , Neoplasias Ovarianas/genética , Neoplasias Ovarianas/patologia , Receptor ErbB-2/genéticaRESUMO
BACKGROUND: Echocardiography is used in humans to characterise the structure and function of the heart, yet is relatively uncommon in studies on the rat, the most commonly used model of human cardiovascular disease. The aim of this study was to show that echocardiography in rats provides useful information on cardiac changes occurring in thyroid dysfunction and can also be used to characterise cardiac abnormalities. METHODS: Transthoracic echocardiography and Doppler techniques with high frequency, high frame rate imaging were used to define cardiac dimensions and function in 240 Wistar rats and cardiac abnormalities in Wistar and spontaneously hypertensive rats (SHR). RESULTS: Echocardiographic assessment of left ventricular dimensions and function and aortic flows was technically feasible in almost all adult Wistar rats and SHR, including those with thyroid dysfunction and cardiac abnormalities. Pulsed-wave Doppler profiles of mitral inflows to estimate diastolic function were less reliably obtained. CONCLUSIONS: Echocardiography is a powerful technique for non-invasive and serial determination of cardiac structure and function in rat models of human cardiovascular disease.