Current Practices and Challenges in the Diagnosis and Management of PKU in Latin America: A Multicenter Survey.
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ABSTRACT:
SUBMITTER: Poloni S
PROVIDER: S-EPMC8399454 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:The management of febrile neutropenia (FN) in pediatrics is evolving. Our objective was to describe current practices for the care of patients with FN in pediatric oncology centers in Latin America and identify areas for practice improvement. We used an online survey to enroll eligible healthcare providers who treat children with cancer in Latin America. The survey addressed respondents' characteristics, the environment of care, and FN care practices, including risk assessment, criteria for hospitalization, initial management of FN, evaluation, antibiotic administration, and discharge. From 220 surveys sent, we received 109 responses and selected 108 from 19 countries for analysis. Most (94%) respondents were working in specialized oncology centers, oncology units within a pediatric or general care hospital. The cohort included oncologists (42%) and infectious diseases physicians (30%). Most (67%) respondents had available guidelines; they used a risk-stratification scoring system (73%) for severe infection; and their guidelines had locally adapted risk stratification (34%) or published risk stratification (51%). The respondents used diverse FN definitions and concepts, including fever definitions, temperature-obtaining methods, neutropenia values for assigning risk, empiric antimicrobials administration, and length of hospitalization. Overall, we detected common practices aligning with standard published recommendations, as well as care variability. These findings can guide further evaluations of care resources and practices to prioritize interventions, and professional networks can be used for FN discussions and consensus in Latin America.
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Project description:BACKGROUND:Malnutrition in critically ill adults in the intensive care unit (ICU) is associated with a significantly elevated risk of mortality. Adequate nutrition therapy is crucial to optimise outcomes. Currently, there is a paucity of such data in Latin America. Our aims were to characterise current clinical nutrition practices in the ICU setting in Latin America and evaluate whether current practices meet caloric and protein requirements in critically ill patients receiving nutrition therapy. METHODS:We conducted a cross-sectional, retrospective, observational study in eight Latin American countries (Argentina, Brazil, Chile, Colombia, Ecuador, Mexico, Panama, and Peru). Eligible patients were critically ill adults hospitalised in the ICU and receiving enteral nutrition (EN) and/or parenteral nutrition (PN) on the Screening Day and the previous day (day -1). Caloric and protein balance on day -1, nutritional status, and prescribed nutrition therapy were recorded. Multivariable logistic regression analysis was performed to identify independent predictors of reaching daily caloric and protein targets. RESULTS:The analysis included 1053 patients from 116 hospitals. Evaluation of nutritional status showed that 74.1% of patients had suspected/moderate or severe malnutrition according to the Subjective Global Assessment. Prescribed nutrition therapy included EN alone (79.9%), PN alone (9.4%), and EN?+?PN (10.7%). Caloric intake met >90% of the daily target in 59.7% of patients on day -1; a caloric deficit was present in 40.3%, with a mean (±SD) daily caloric deficit of -688.8?±?455.2 kcal. Multivariable logistic regression analysis showed that combined administration of EN?+?PN was associated with a statistically significant increase in the probability of meeting >90% of daily caloric and protein targets compared with EN alone (odds ratio, 1.56; 95% confidence interval, 1.02-2.39; p?=?0.038). CONCLUSIONS:In the ICU setting in Latin America, malnutrition was highly prevalent and caloric intake failed to meet targeted energy delivery in 40% of critically ill adults receiving nutrition therapy. Supplemental administration of PN was associated with improved energy and protein delivery; however, PN use was low. Collectively, these findings suggest an opportunity for more effective utilisation of supplemental PN in critically ill adults who fail to receive adequate nutrition from EN alone.
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Project description:Rare diseases (RDs) cause considerable death and disability in Latin America. Still, there is no consensus on their definition across the region. Patients with RDs face a diagnostic odyssey to find a correct diagnosis, which may last many years and creates a burden for caregivers, healthcare systems, and society. These diagnostic delays have repercussions on the health and economic burden created by RDs and continue to represent an unmet medical need. This review analyzes barriers to the widespread adoption of newborn screening (NBS) programs and early diagnostic methods for RDs in Latin America and provides recommendations to achieve this critical objective. Increasing the adoption of NBS programs and promoting early diagnosis of RDs are the first steps to improving health outcomes for patients living with RDs. A coordinated, multistakeholder effort from leaders of patient organizations, government, industry, medical societies, academia, and healthcare services is required to increase the adoption of NBS programs. Patients' best interests should remain the guiding principle for decisions regarding NBS implementation and early diagnosis for RDs.
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Project description:Healthcare systems in Latin America are broadly heterogeneous, but all of them are burdened by a dramatic rise in liver disease. Some challenges that these countries face include an increase in patients requiring a transplant, insufficient rates of organ donation, delayed referral, and inequitable or suboptimal access to liver transplant programs and post-transplant care. This could be improved by expanding the donor pool through the implementation of education programs for citizens and referring physicians, as well as the inclusion of extended criteria donors, living donors and split liver transplantation. Addressing these shortcomings will require national shifts aimed at improving infrastructure, increasing awareness of organ donation, training medical personnel, and providing equitable access to care for all patients.
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Project description:ObjectiveThere is evidence linking the built environment (BE) with physical activity (PA), but few studies have been conducted in Latin America (LA). State-of-the-art methods and protocols have been designed in and applied in high-income countries (HIC). In this paper, we identify key challenges and potential solutions to conducting high-quality PA and BE research in LA.MethodsThe experience of implementing the IPEN data collection protocol (IPEN: International Physical Activity Environment Network) in Curitiba, Brazil; Bogotá, Colombia; and Cuernavaca, Mexico (2010-2011); is described to identify challenges for conducting PA and BE research in LA.ResultsFive challenges were identified: lack of academic capacity (implemented solutions (IS): building a strong international collaborative network); limited data availability, access and quality (IS: partnering with influential local institutions, and crafting creative solutions to use the best-available data); socio-political, socio-cultural and socio-economic context (IS: in-person recruitment and data collection, alternative incentives); safety (IS: strict rules for data collection procedures, and specific measures to increase trust); and appropriateness of instruments and measures (IS: survey adaptation, use of standardized additional survey components, and employing a context-based approach to understanding the relationship between PA and the BE). Advantages of conducting PA and BE research in LA were also identified.ConclusionsConducting high-quality PA and BE research in LA is challenging but feasible. Networks of institutions and researchers from both HIC and LMIC play a key role. The lessons learned from the IPEN LA study may be applicable to other LMIC.
| S-EPMC4268364 | biostudies-literature
Project description:Evidence-based treatment guidelines have undoubtedly advanced medical practice and supported optimal management of acromegaly, but their application may be hampered by limited access to the latest treatment options.In this retrospective, narrative review, the authors revisited existing treatment guidelines for acromegaly in Latin America. These were considered in conjunction with published evidence chosen at the authors' discretion.In a socially and economically diverse region, such as Latin America, any regional practice guidelines need to appreciate that recommended treatment options, such as surgery by expert pituitary surgical teams and drug therapies, especially somatostatin analogs, are often not available due to limited resources. In these instances, physicians may be obliged to apply less effective therapeutic options.The current article looks at the practical aspects of acromegaly management in Latin America and discusses this in the context of existing guidelines. Furthermore, we consider potential strategies to make better use of resources through combination and multimodal approaches to treatment.
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Project description:BACKGROUND: The epidemiology of candidemia varies depending on the geographic region. Little is known about the epidemiology of candidemia in Latin America. METHODS: We conducted a 24-month laboratory-based survey of candidemia in 20 centers of seven Latin American countries. Incidence rates were calculated and the epidemiology of candidemia was characterized. RESULTS: Among 672 episodes of candidemia, 297 (44.2%) occurred in children (23.7% younger than 1 year), 36.2% in adults between 19 and 60 years old and 19.6% in elderly patients. The overall incidence was 1.18 cases per 1,000 admissions, and varied across countries, with the highest incidence in Colombia and the lowest in Chile. Candida albicans (37.6%), C. parapsilosis (26.5%) and C. tropicalis (17.6%) were the leading agents, with great variability in species distribution in the different countries. Most isolates were highly susceptible to fluconazole, voriconazole, amphotericin B and anidulafungin. Fluconazole was the most frequent agent used as primary treatment (65.8%), and the overall 30-day survival was 59.3%. CONCLUSIONS: This first large epidemiologic study of candidemia in Latin America showed a high incidence of candidemia, high percentage of children, typical species distribution, with C. albicans, C. parapsilosis and C. tropicalis accounting for the majority of episodes, and low resistance rates.
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Project description:Latin America (LatAm) has a rich and historically significant role in delineating both novel and well-documented genetic disorders. However, the ongoing advancements in the field of human genetics pose challenges to the relatively slow adaption of LatAm in the field. Here, we describe past and present contributions of LatAm to the discovery of novel genetic disorders, often referred as novel gene-disease associations (NGDA). We also describe the current methodologies for discovery of NGDA, taking into account the latest developments in genomics. We provide an overview of opportunities and challenges for NGDA research in LatAm considering the steps currently performed to identify and validate such associations. Given the multiple and diverse needs of populations and countries in LatAm, it is imperative to foster collaborations amongst patients, indigenous people, clinicians and scientists. Such collaborative effort is essential for sustaining and enhancing the LatAm´s contributions to the field of NGDA.
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Project description:The generalization of the early rheumatoid arthritis (ERA) concept and the existence of a window of therapeutic opportunity-a time span in which the institution of a proper therapeutic method for the disease would determine clinical improvement-have set the notion that early diagnosis and treatment may modify the course of the disease. Although in several regions of the world, especially in North America and Europe, since the year 2000, a significant reduction in diagnostic delay was observed in cohorts of patients with rheumatoid arthritis (RA), probably reflecting a stronger awareness of the importance of early diagnosis, this is not a reality in Latin America (LA). LA is a region of great economic inequality, with disparities in access to the public healthcare system and limited access to private medicine, being widely difficult to obtain a specialized medical evaluation in both scenarios. This paper aims to briefly review the main difficulties in the management of ERA in LA, based on the review of the literature, on the evaluation of a survey conducted among 214 rheumatologists of LA, members of Pan-American League of Associations for Rheumatology (PANLAR) and the experience of the authors. The paper also aims to propose solutions to the difficulties in managing ERA in LA.
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Project description:AimSepsis treatment has been standardized in many countries worldwide. However, treatment of sepsis in Japan has developed independently, and how Japanese physicians actually treat sepsis patients nationwide remains uninvestigated. The aim of this study was to clarify the current practice for septic patients in Japan and how it differs from standard care throughout the world.MethodsThis study was designed as a prospective, cross-sectional, self-reported questionnaire- and Web-based electronic survey in Japan. The survey was undertaken to assess respondents' clinical practices and preferences regarding treatment strategies, sepsis assessment, and management in the setting of critical illness. An exploratory factor analysis and a hierarchical cluster analysis were carried out to identify the treatments distinctive to Japan, called "Galápagos therapies".ResultsThe final analysis included 295 respondents. According to the factor analysis, we defined anticoagulant therapy for disseminated intravascular coagulation, antimediator renal replacement therapy, and others as Galápagos therapies. These Galápagos therapies were undertaken by approximately two-thirds of the Japanese physicians who responded. We classified Japanese physicians according to three patterns of clinical practice carried out for sepsis: (i) those who do not perform Galápagos therapies but do perform worldwide standardized care, (ii) those who perform Galápagos therapies on top of worldwide standardized care, (iii) those who do not perform worldwide standardized care.ConclusionOn the basis of a nationwide questionnaire-based survey in Japan, we clarified distinctive sepsis treatments performed in Japan, such as antimediator renal replacement therapy and treatment for sepsis-induced disseminated intravascular coagulation.
| S-EPMC7507569 | biostudies-literature