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Background: Individuals with rare diseases (RD) have been historically understudied. Previous publications reported that existing primary health care (PHC) workforces and associated infrastructure had been shown to improve their access and health-related outcomes in low- and middle-income countries (LMICs). As current evidence about the impact of PHC on patients diagnosed with RD is yet highly dispersed, this scoping review aimed to collate available evidence of the impact of PHC on patients with RD and summarize published information from multiple stakeholders about the perceived usefulness and barriers to effective use of the PHC system. Methods: We searched Embase, Health System Evidence, PubMed, LILACS / BVS, and The Cochrane Library, from inception to September 1, 2022, for publications providing clear expert- or experience-based insights or data from patients living with RD at the PHC level of care. We included publications highlighting barriers to integrated care of patients with RD, reported by multiple social actors involved in caring for patients with RD. Two investigators screened publications, extracted data, and clustered information among records deemed eligible for inclusion. Data synthesis was performed using narrative and thematic-based analysis. Major findings identified and coded through a semantic-driven analysis were processed in vosViewer software and reported using descriptive statistics. Findings: Eighty publications were included in this review. Quali-quantitative analyses evidenced that the PHC level is essential for approaching patients with RD, mainly due to its longitudinal, multidisciplinary, and coordinated care delivery. In addition, several publications highlighted that the medical curriculum is inappropriate for preparing health care providers to deal with patients presenting unusual signs and symptoms and being diagnosed with RD. PHC teams are essential in orienting patients and families on emergency events. Technology-related concepts were reported in 19 publications, emphasizing their effectiveness on early diagnosis, optimal treatment definition, improvement of quality of life, and long-lasting follow-up. Conclusions: We provided valuable information on the effectiveness of the PHC in fostering a creative, integrative, and supportive environment for patients living with RD. Our results can be helpful to several stakeholders in deciding what actions are still pending to achieve a solid and positive experience for patients with RD in the PHC. Registration: PROSPERO (CRD42022332347).
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Calidad de Vida , Enfermedades Raras , Humanos , Enfermedades Raras/terapia , Atención a la Salud , Personal de SaludRESUMEN
To provide a synthesis of diverse evidence on the impact of the non-therapeutic preventive measures, specifically quarantine, physical distancing and social isolation, on the control of COVID-19. A scoping review conducted in the PubMed, Embase, LILACS, CENTRAL and SCOPUS databases between 2019 and August 28th, 2020. The descriptors used were the following: "quarantine", "physical distancing", "social isolation", "COVID-19" and "SARS-Cov2". Studies that addressed the non-therapeutic preventive measures in people exposed to SARs-CoV-2 in community settings and health services were included. A total of 14,442 records identified through a database search were reduced to 346 studies and, after a standardized selection process, a total of 68 articles were selected for analysis. A total of 35 descriptive, cross-sectional or longitudinal observational studies were identified, as well as 3 reviews, in addition to 30 studies with mathematical modeling. The main intervention assessed was social distancing (56.6%), followed by lockdown (25.0%) and quarantine (18.4%). The main evidence analyzed points to the need for rapid responses to reduce the number of infections, deaths and hospital admissions, especially in intensive care unit beds.The current review revealed consistent reports that the quarantine, physical distancing and social isolation are effective strategies to contain spread of the new coronavirus.
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Patients infected by the SARS-CoV-2 virus are commonly diagnosed with threatening liver conditions associated with drug-induced therapies and systemic viral action. RNA-Seq data from cells in bronchoalveolar lavage fluid from COVID-19 patients have pointed out dysregulation of kallikrein-kinin and renin-angiotensin systems as a possible mechanism that triggers multi-organ damage away from the leading site of virus infection. Therefore, we measured the plasma concentration of biologically active peptides from the kallikrein-kinin system, bradykinin and des-Arg9-bradykinin, and liver expression of its proinflammatory axis, bradykinin 1 receptor (B1R). We measured the plasma concentration of bradykinin and des-Arg9-bradykinin of 20 virologically confirmed COVID-19 patients using a liquid chromatography-tandem mass spectrometry-based methodology. The expression of B1R was evaluated by immunohistochemistry from post-mortem liver specimens of 27 COVID-19 individuals. We found a significantly higher blood level of des-Arg9-bradykinin and a lower bradykinin concentration in patients with COVID-19 compared to a healthy, uninfected control group. We also observed increased B1R expression levels in hepatic tissues of patients with COVID-19 under all hepatic injuries analyzed (liver congestion, portal vein dilation, steatosis, and ischemic necrosis). Our data indicate that des-Arg9-bradykinin/B1R is associated with the acute hepatic dysfunction induced by the SARS-CoV-2 virus infection in the pathogenesis of COVID-19.
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BACKGROUND: Colorectal cancer decrease quality of life, due to treatment and disease, and physical exercise can improve the quality of life of patients with cancer, but it is still uncertain whether physical exercise can improve quality of life in these patients. AIM: To determine if there is an improvement in the quality of life in patients diagnosed with colorectal cancer undergoing physical exercise. METHODS: A systematic literature review was carried out; non-randomized clinical trials of any year were included from PubMed, Embase, Cochrane, and VHL platforms, without specific language delimitation, and analyzed the influence of physical exercise on the quality of life of patients diagnosed with colorectal cancer, and for analysis of bias, the Cochrane Manual for the Development of Systematic Intervention Reviews was used. RESULTS: Four studies were analyzed in full to produce the results; of these, three intervened with unsupervised aerobic exercises and one with semi-supervised aerobic exercises, all used the FACT-C as a questionnaire to assess quality of life, some even used FACT-G and/or SF-12, and only one author found significance values in the variables of physical well-being, emotional well-being, and functional well-being of the questionnaire, compared with the control group. CONCLUSION: There were no significant increases in the quality of life of patients diagnosed with colorectal cancer compared with the control group.
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Neoplasias Colorrectales/rehabilitación , Terapia por Ejercicio , Calidad de Vida , Ensayos Clínicos como Asunto , Neoplasias Colorrectales/complicaciones , Neoplasias Colorrectales/psicología , Humanos , Resultado del TratamientoRESUMEN
Patients with major presentations of alopecia experience physically harmful effects and psychological comorbidities, such as depression and anxiety. Oral minoxidil (OM) has been suggested by dermatologists as a potential remedy; however, its effectiveness remains unclear. This systematic review aims to collate published studies and to analyze the effect of OM among patients diagnosed with any type of alopecia. For this systematic review, Medline/PubMed, Cochrane Central, EMBASE, Web of Sciences, and Latin American and Caribbean Health Sciences Information System were searched for relevant studies from inception to September 21, 2019. Of 1960 studies retrieved in several electronic databases and three additional records identified though reference list from potentially eligible studies, nine studies (one randomized controlled trial and eight nonrandomized controlled trials) met the requirements and were used in our analysis. Although we found positive effects in favor of OM, this should be interpreted cautiously due to very low quality of the evidence of outcomes in the selected studies. Definitive conclusions are not possible without high-quality trials. This review has highlighted the absence of high-quality randomized controlled trials evaluating OM in the treatment of various types of alopecia. Given the mild adverse events of OM, future studies should also analyze doses and duration to maximize efficacy and decrease side effects.