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Patient-centered care and healthcare consumerism are dominant models of the patient-provider relationship. Positioning theory was applied to examine consumers' and physicians' positions on patient-centered care and healthcare consumerism, along with their attitudes toward direct-to-consumer healthcare service advertising and trust in the medical profession. Surveys were conducted with a convenience sample of consumers and physicians respectively. Patient-centered care was the only theoretical construct that both consumers and physicians unequivocally embraced. Both groups were either ambivalent or skeptical of the other three concepts. Between the two groups, physicians exhibited a stronger endorsement of patient-centered care and more negative attitudes toward advertising than consumers. When the relationships among the theoretical constructs were examined, a negative correlation between patient-centered care and consumerism was found among consumers. Also, patient-centered care and trust were negatively correlated in both groups. Implications of these findings are discussed for strategic communication, consumer and physician education, and future research.
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Direct-to-consumer advertisements for healthcare services constitute a rare channel of public communication where consumers see and hear directly from their local providers and healthcare organizations. Although spending on these advertisements has increased drastically during the past decades, research on their content and effects remains rare. To fill this gap, we analyzed primetime television advertisements for healthcare services directly targeting consumers. The advertisements were collected from the two largest media markets in Nevada for one month. In total, 795 advertisements were identified, and 106 of them were non-duplicates. Analysis revealed that the advertisements focused on patients' good health outcomes by showing them smiling, going out and about, having fun with others, and enjoying rigorous physical activities. On the other hand, the advertisements focused less on the providers. Although the advertisements often showed providers in clinical settings, basic information about their professional degrees was often missing. Mentions of providers' other qualifications and professional experiences were even scarcer. Also, a substantial number of advertisements failed to show providers interacting with patients. Additional analysis of patient and provider characteristics revealed under-representation of racial or ethnic minority and older adult patients. Representation of women and minorities as providers was even more uncommon. We discussed the implications of these findings from the perspective of patient expectation and made suggestions to help providers improve their direct-to-consumer advertisements.
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Publicidad , Motivación , Humanos , Femenino , Anciano , Etnicidad , Grupos Minoritarios , Televisión , Atención a la SaludRESUMEN
BACKGROUND: In the 1970s, the Federal Trade Commission declared that allowing medical providers to advertise directly to consumers would be "providing the public with truthful information about the price, quality or other aspects of their service." However, our understanding of the advertising content is highly limited. OBJECTIVE: To assess whether direct-to-consumer medical service advertisements provide relevant information on access, quality and cost of care, a content analysis was conducted. METHOD: Television and online advertisements for medical services directly targeting consumers were collected in two major urban centres in Nevada, USA, identifying 313 television advertisements and 200 non-duplicate online advertisements. RESULTS: Both television and online advertisements reliably conveyed information about the services provided and how to make an appointment. At the same time, less than half of the advertisements featured insurance information and hours of operation and less than a quarter of them contained information regarding the quality and price of care. The claims of quality were substantiated in even fewer advertisements. The scarcity of quality and cost information was more severe in television advertisements. CONCLUSION: There is little evidence that medical service advertising, in its current form, would contribute to lower prices or improved quality of care by providing valuable information to consumers.
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Aprobación de Drogas , Humanos , Niño , Adulto , Estados Unidos , United States Food and Drug AdministrationRESUMEN
BACKGROUND: The occurrence of brain metastases (at diagnosis or at relapse) in patients with Wilms tumor is very rare. METHODS: We retrospectively reviewed the clinical characteristics of patients with Wilms tumor and relapse to the brain enrolled on the National Wilms Tumor Studies (NWTSs) 1-5. RESULTS: Intracranial relapse was documented in 47 patients (0.5%). Of the 45 patients with adequate data, 26 (58%) patients were male. Thirty-eight (84%) patients had favorable histology Wilms tumor. In 30 patients (67%), the appearance of intracranial disease was preceded by relapse at another site. Ten patients did not have any disease-directed therapy. Surgical resection was attempted in 15 patients; gross total resection was achieved in 11 patients. Twenty-nine patients received brain irradiation; the median dose was 3,000 cGy (range 1,080-4,000 cGy). Twenty-seven patients received chemotherapy. The 5-year overall survival from the time of intracranial relapse was 28.7% (95% confidence interval: 14.4-43.1%). Nine patients (all favorable histology Wilms tumor) were alive with a median follow-up from brain relapse of 140 months (range 35-381 months). All nine survivors received radiation therapy, eight received chemotherapy, and four underwent surgery (two gross total resection, two partial resection). The overall survival after brain metastases of the NWTS-5 patients was significantly higher than the overall survival of the NWTS 1-4 patients (P value = 0.029, log-rank test). CONCLUSIONS: Patients with Wilms tumor recurrence involving the brain may have durable survival, particularly those treated in recent years. Multimodality therapy including radiation and chemotherapy should be considered for these patients.
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Neoplasias Encefálicas/epidemiología , Neoplasias Encefálicas/secundario , Neoplasias Encefálicas/terapia , Neoplasias Renales/patología , Tumor de Wilms/secundario , Adolescente , Niño , Preescolar , Ensayos Clínicos como Asunto , Supervivencia sin Enfermedad , Femenino , Humanos , Lactante , Masculino , Estudios RetrospectivosRESUMEN
In the era of personalized and precision medicine, the approach to healthcare is quickly changing. Genetic and other molecular information are being increasingly demanded by clinicians and expected by patients for prevention, screening, diagnosis, prognosis, health promotion, and treatment of an increasing number of conditions. As a result of these developments, Canadian health leaders must understand and be prepared to lead the necessary changes associated with these disruptive technologies. This article focuses on precision therapeutics but also provides background on the concepts and terminology related to personalized and precision medicine and explores Canadian health leadership and system issues that may pose barriers to their implementation. The article is intended to inspire, educate, and mobilize Canadian health leaders to initiate dialogue around the transformative changes necessary to ready the healthcare system to realize the benefits of precision therapeutics.
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À l'ère de la médecine personnalisée et de la médecine de précision, l'approche envers les soins est en rapide mutation. Les cliniciens exigent de plus en plus d'information génétique et moléculaire et les patients s'attendent à la fournir pour la prévention, le dépistage, le diagnostic, le pronostic, la promotion de la santé et le traitement d'un nombre croissant de maladies. Les leaders en santé canadiens doivent comprendre les changements nécessaires liés à ces technologies perturbantes et ouvrir la voie. Le présent article s'attarde sur la thérapeutique de précision, mais contient également de l'information générale sur les concepts et la terminologie liés à la médecine personnalisée et à la médecine de précision. Il explore également le leadership en santé canadien et les problèmes liés au système qui peuvent nuire à leur mise en Åuvre. L'article vise à inspirer, informer et mobiliser les leaders en santé canadiens à amorcer un dialogue sur les transformations nécessaires pour préparer le système de santé à profiter des bienfaits de la thérapeutique de précision.
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BACKGROUND: This study examines what proportion of families of recently diagnosed pediatric cancer patients are offered recommended psychosocial services, and if that proportion is linked to size of institution or number of psychosocial staff. PROCEDURES: A web-based survey was offered to all institutions belonging to the Children's Oncology Group (COG). RESULTS: Respondents from 127/212 (=59.9%) COG institutions provided information about percentage of families offered specific services within the first 30 days after diagnosis, and barriers to providing such services, as well as information about other factors that might affect their ability to provide psychosocial care. All sites reported that ≥50% of families are offered 21 of the 27 services investigated in this study. Over half of respondents (n=290) indicated that inadequate funding for staff (72%) and families' time constraints (63%) were barriers to providing psychosocial care. There was a positive relationship between the total number of psychosocial staff and the number of new patients seen annually (Pearson correlation=0.3409, P-value < 0.0004), but not between the total number of psychosocial staff and specific services offered. Most sites do not use validated assessment tools or evidence-based psychosocial interventions. CONCLUSIONS: While some version of most recommended psychosocial services are offered across COG institutions, evidence-based psychosocial services are offered at only 11% of sites. Advances in psychosocial outcomes in pediatric oncology could be accelerated by multi-site collaboration, use of standardized assessment tools, and evidence-based interventions.
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Accesibilidad a los Servicios de Salud , Neoplasias , Calidad de Vida , Apoyo Social , Servicio Social/organización & administración , Niño , Encuestas de Atención de la Salud , Humanos , Recursos HumanosRESUMEN
Although genetic testing can be vastly informative, it creates a dilemma if a patient does not want to disclose an abnormal genetic test to at-risk relatives. A sample of 200 participants from Nevada (100 physicians, 100 non-physicians) completed an 11-item questionnaire asking demographic information, familiarity with genetics and genetic testing, and opinions about a physician's role in a hypothetical case in which a patient does not wish to communicate her BRCA1 mutation to her sister. Although most respondents did not think the physician should notify the sister against the patient's wishes, more non-physicians (40%) than physicians (23%) contended that the physician should do so (p = 0.0119). Most respondents from both groups agreed that the physician should not have the legal duty to notify the sister, would not be morally justified in sharing genetic test results with the sister, but should have the right to notify a patient's relatives if the disease is "serious, preventable, and treatable." More non-physicians than physicians agreed that physicians should have an educational requirement on how to communicate genetic test results to patients and their family (88% vs 65%, p = 0.0002). Most physicians (70%) reported a familiarity/strong familiarity with genetic testing compared to non-physicians (33%; p < 0.0001). Future qualitative research should assess physicians' understanding of issues surrounding familial communication of genetic test results. Educational interventions to facilitate effective communication to patients and families are needed and welcomed by most physicians. Discrepancies between the attitudes of physicians and patients or the public need to be better understood and addressed.
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Patient-centered care and healthcare consumerism are the two most dominant ideas about the relationship between patients and providers in the United States. To identify providers' positions between the two perspectives, we analyzed the content of direct-to-consumer healthcare service advertisements. The advertisements were collected in the state of Nevada (N = 323) and their landing pages were analyzed for provider attributes, patient experience features, and terms referring to patients and providers. The results showed that the advertisements fully embraced the notion of patient-centeredness by commonly claiming patient-centered care and frequently using the term "patient." The advertisements also contained multiple indicators of healthcare consumerism, although they avoided using the terms "consumer/customer/client" closely associated with consumerism. Contrary to the prominence of patient experience features, provider attributes were not common. An additional analysis of inter-specialty differences in advertising features confirmed the strong consumerism position of cosmetic surgery providers. Application of the healthcare service advertising analytic scheme developed for this study could help providers and healthcare administrators recognize how their advertising messages may reflect their values.
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OBJECTIVE: To determine the event-free survival (EFS) and overall survival (OS) of children with very low risk Wilms tumor (VLRWT) treated with surgery only. BACKGROUND: Previous studies suggested that postoperative chemotherapy had not improved the prognosis of children with VLRWT. A total of 77 children <24 months of age with small (<550 g) Stage I favorable histology Wilms tumors were treated with surgery only. This study was closed based on stopping rules to ensure that the 2-year EFS was > or =90%. METHODS: A total of 77 children were assessed for EFS and OS. Of these patients, 21 enrolled at the time of closure were recalled, treated with dactinomycin and vincristine (regimen EE4A), and censored for analysis thereafter. About 111 children subsequently treated with EE4A were available for comparison. RESULTS: Median follow-up of surviving patients was 8.2 years for surgery only (range, 1.9-11.8 years) and 5.2 years for the EE4A group (range, 1.6-8.9 years). The estimated 5-year EFS for surgery only was 84% (95% confidence interval [CI]: 73%, 91%); for the EE4A patients it was 97% (95% CI: 92%, 99%, P = 0.002). One death was observed in each treatment group. The estimated 5-year OS was 98% (95% CI: 87%, 99%) for surgery only and 99% (95% CI: 94%, 99%) for EE4A (P = 0.70). CONCLUSION: The surgery-only EFS was lower than anticipated but, coupled with a much higher than anticipated salvage rate of the chemotherapy naive patients whose disease recurred, led to an observed long-term OS equivalent to that seen with 2-drug chemotherapy. This approach to the treatment of patients with VLRWT eliminates the toxic side-effects of chemotherapy for a large majority of patients. A follow-up study is underway to confirm these findings.
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Neoplasias Renales/cirugía , Tumor de Wilms/cirugía , Humanos , Lactante , Neoplasias Renales/mortalidad , Factores de Riesgo , Tasa de Supervivencia , Factores de Tiempo , Resultado del Tratamiento , Tumor de Wilms/mortalidadRESUMEN
Mantle cell lymphoma (MCL) is a relatively rare B-cell non-Hodgkin lymphoma, typically presenting with extensive lymphadenopathy, bone marrow involvement, and splenomegaly. Extranodal sites can also be involved. We discuss a 73-year-old man whose MCL presented with a 6-month history of a subdermal mass of the right upper thigh and no systemic symptoms.
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Acute effects of outdoor air pollution on asthma exacerbations may vary by asthma phenotype (allergic vs nonallergic). Associations of ambient PM2.5 and ozone concentrations with acute asthma visits (office, urgent, emergency, and hospitalization) were investigated using electronic medical records. International Classification of Disease codes were used to identify asthmatics, and classify them based on the presence or absence of an allergic comorbidity in their medical records. Daily 24-h average PM2.5, 8-h maximum ozone, and mean temperature were obtained from a centralized monitor. Using a time-stratified case-crossover approach, pollutant concentrations were modeled using moving averages and distributed lag nonlinear models (lag 0-6) to examine lag associations and nonlinear concentration-response. The adjusted odds ratios for a 10 µg/m3 increase in 3-day moving average (lag 0-2) PM2.5 in the two-pollutant models among patients with and without allergic comorbidities were 1.10 (95% confidence interval [CI]: 1.07, 1.13) and 1.05 (95% CI: 1.02, 1.09), respectively; and for a 20 ppb increase in 3-day moving average (lag 0-2) ozone were 1.08 (95% CI: 1.02, 1.14) and 1.00 (95% CI: 0.95, 1.05), respectively. Estimated odds ratios among patients with allergic comorbidities were consistently higher across age, sex, and temperature categories. Asthmatics with an allergic comorbidity may be more susceptible to ambient PM2.5 and ozone.
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Contaminantes Atmosféricos , Contaminación del Aire , Asma , Ozono , Contaminantes Atmosféricos/efectos adversos , Contaminantes Atmosféricos/análisis , Contaminación del Aire/efectos adversos , Contaminación del Aire/análisis , Asma/epidemiología , Comorbilidad , Humanos , Ozono/análisis , Material Particulado/análisisRESUMEN
OBJECTIVE: We evaluated the use of alternating cycles of cyclophosphamide/etoposide and carboplatin/etoposide in children entered on National Wilms Tumor Study (NWTS)-5 who were diagnosed between August 1, 1995 and May 31, 2002 and who relapsed after chemotherapy with vincristine, actinomycin D, and doxorubicin (VAD) and radiation therapy (DD-4A). PATIENTS AND METHODS: One hundred three patients who relapsed or had progressive disease after initial VAD chemotherapy and radiation therapy were registered on stratum C of the NWTS-5 Relapse protocol. Twelve patients were not evaluable: five due to insufficient data, six due to major protocol violations, and one for refusal of therapy. Among the 91 remaining patients, 14 with stage V Wilms tumor (WT), 1 with contralateral relapse, and 16 who did not achieve a complete response (CR) to the initial three-drug chemotherapy were not included in this analysis. Relapse treatment included alternating courses of the drug pairs cyclophosphamide/etoposide and carboplatin/etoposide, surgery, and radiation therapy. RESULTS: The outcomes of 60 patients were analyzed. The lung was the only site of relapse for 33 patients; other sites of relapse included the operative bed, the abdomen, and liver. Four-year event-free survival (EFS) and overall survival (OS) were 42.3 and 48.0% respectively for all patients and were 48.9 and 52.8% for those who relapsed in the lungs only. Thrombocytopenia was the most frequent toxicity. CONCLUSION: These results demonstrate that approximately one-half of children with unilateral WT who relapse after initial treatment with VAD and radiation therapy can be successfully retreated.
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Protocolos de Quimioterapia Combinada Antineoplásica/administración & dosificación , Neoplasias Renales/tratamiento farmacológico , Tumor de Wilms/tratamiento farmacológico , Carboplatino/administración & dosificación , Preescolar , Terapia Combinada , Dactinomicina/administración & dosificación , Doxorrubicina/administración & dosificación , Esquema de Medicación , Etopósido/administración & dosificación , Femenino , Humanos , Lactante , Recién Nacido , Neoplasias Renales/patología , Neoplasias Renales/radioterapia , Neoplasias Renales/cirugía , Masculino , Estadificación de Neoplasias , Recurrencia , Tumor de Wilms/patología , Tumor de Wilms/radioterapia , Tumor de Wilms/cirugíaRESUMEN
Physician-investigators are required to obtain informed consent from adult participants in their studies. Inclusion of children in research legally requires informed permission of a child's parent or guardian. It is increasingly recognized that a child need not assume a passive role when included in research, but that his or her active involvement should be sought, as expressed by the child's assent to partake in clinical research. This article briefly explores the history of assent and the central role of assessing a child's understanding of research and preference for participating in decisions related to their care, as necessary components of meaningful assent.