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Exome and genome sequencing (ES/GS) are routinely used for the diagnosis of genetic diseases in developed countries. However, their implementation is limited in countries from Latin America. We aimed to describe the results of GS in patients with suspected rare genetic diseases in Colombia. We studied 501 patients from 22 healthcare sites from January to December 2022. GS was performed in the index cases using dried blood spots on filtercards. Ancestry analysis was performed under iAdmix. Multiomic testing was performed when needed (biomarker, enzymatic activity, RNA-seq). All tests were performed at an accredited genetic laboratory. Ethnicity prediction data confirmed that 401 patients (80%) were mainly of Amerindian origin. A genetic diagnosis was established for 142 patients with a 28.3% diagnostic yield. The highest diagnostic yield was achieved for pathologies with a metabolic component and syndromic disorders (p < 0.001). Young children had a median of 1 year of diagnostic odyssey, while the median time for adults was significantly longer (15 years). Patients with genetic syndromes have spent more than 75% of their life without a diagnosis, while for patients with neurologic and neuromuscular diseases, the time of the diagnostic odyssey tended to decrease with age. Previous testing, specifically karyotyping or chromosomal microarray were significantly associated with a longer time to reach a definitive diagnosis (p < 0.01). Furthermore, one out of five patients that had an ES before could be diagnosed by GS. The Colombian genome project is the first Latin American study reporting the experience of systematic use of diagnostic GS in rare diseases.
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The current work focuses on developing nanocomposite films using taro starch and cellulose nanofibers extracted from the root's peel. Films were prepared using mixtures of starch, cellulose nanofibers (0 %, 5 %, 10 %, and 15 % w/w), glycerol, and water. Results showed that the addition of cellulose nanofibers increased film thickness, opacity, UV-light barrier capacity, and water swelling percentage. All films showed a typical B-type X-ray diffraction pattern characteristic of semicrystalline materials. FTIR analysis confirmed chemical interactions between the starch chains and the nanofibers, which probably interact through hydrogen bonds. Nanocomposite films exhibited increased tensile strength and reduced strain at break compared to control materials. Films with cellulose nanofibers showed an increase in Young's modulus compared to control ones, with no differences observed between films with cellulose nanofibers at 10 % and 15 %. Furthermore, films with cellulose nanofibers at 5 % and 10 % exhibited lower water vapor permeability than control samples, while those with cellulose nanofibers at 15 % showed an increase in this parameter compared to other materials. These results suggest that incorporating taro cellulose nanofibers is a promising alternative for obtaining taro starch nanocomposites films with improved properties.
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Celulosa , Nanocompuestos , Nanofibras , Permeabilidad , Almidón , Nanofibras/química , Nanocompuestos/química , Celulosa/química , Almidón/química , Resistencia a la Tracción , Vapor , Agua/química , Difracción de Rayos XRESUMEN
CONTEXT: Interventions to improve the quality of care for people affected by serious illness commonly fail to reach patients from marginalized and underserved communities, which include those characterized by racialized or indigenous identity, sexual and gender minority status, and rural living. Interventions to improve care through serious illness conversations have demonstrated benefit, but little is known about their implementation in health systems that predominantly serve these patient groups. OBJECTIVES: The study aimed to understand factors influencing implementation of a serious illness communication-focused intervention-the Serious Illness Care Program in health systems who primarily provide care to marginalized and underserved communities. METHODS: Qualitative interviews (16) and focus groups (3) were conducted with 19 interdisciplinary team members from six geographically diverse U.S. healthcare systems. Using a template analysis approach, investigators coded data inductively and deductively to identify themes. RESULTS: Three themes emerged: patient factors, intervention elements, and health system contextual factors. Participants highlighted mission-driven efforts, creativity, interprofessional practice, and trainees as enablers of success. They identified weaknesses in the intervention's communication tool-the Serious Illness Conversation Guide as barriers to implementation of conversations. Resource constraints, socio-economic vulnerability, and mistrust in the health system were seen as additional barriers. CONCLUSIONS: Health systems that provide care to underserved and marginalized communities face unique challenges implementing the Serious Illness Care Program. They also possess assets, some unique to these settings, that support program adoption. Findings suggest that implementation of similar programs in low-resource healthcare settings may help address unmet needs among marginalized populations.
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Investigación Cualitativa , Humanos , Proveedores de Redes de Seguridad , Grupos Focales , Masculino , Femenino , Estados Unidos , Comunicación , Enfermedad Crítica , Atención a la SaludRESUMEN
Many adults cycle between the hospital and skilled nursing facilities (SNFs) near the end of life. However, palliative care services, which can provide specialized support for patients with serious illness, are often limited at SNFs. The "3C's Palliative Care Program," a 5-month pilot, aimed to improve palliative care access for patients admitted to subacute rehabilitation at an SNF affiliated with an urban academic medical center. This manuscript focuses on the pilot's feasibility, acceptability based on SNF clinician feedback from interviews, and lessons learned. The 3C's Program featured primary palliative care skill coaching, virtual palliative care consultations, and continuity via referrals to home-based palliative care at discharge. Ninety percent of SNF clinicians surveyed recommended the continuation of the pilot. SNF clinicians felt the program improved their ability to identify patients for PC consultation, to understand the role and value of palliative care, and to appreciate their patients' illness trajectories. Lessons learned from this pilot suggest SNF-Palliative Care clinician relationship building and simple patient identification mechanisms for palliative care are key to the success of palliative care at SNF integration.
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Cuidados Paliativos , Instituciones de Cuidados Especializados de Enfermería , Humanos , Proyectos Piloto , Cuidados Paliativos/organización & administración , Masculino , Accesibilidad a los Servicios de Salud , FemeninoRESUMEN
PURPOSE: To gather and leverage the voices of students to drive creation of required, integrated palliative care curricula within undergraduate medical education in Massachusetts, which is lacking in a majority of U.S. medical schools. METHOD: The study was conducted by the Massachusetts Medical Schools' Collaborative, a working group committed to ensuring all medical students in Massachusetts receive foundational training in serious illness communication (SIC) and palliative care. Eight focus groups (2 per participating medical school) were conducted during January-May 2021 and included a total of 50 students from Boston University Chobanian & Avedisian School of Medicine, Harvard Medical School, Tufts University School of Medicine, and the UMass Chan Medical School. Data collected from focus groups were discussed and coded. Themes were identified using the immersion/crystallization qualitative data analysis approach. RESULTS: Six key themes emerged. Students viewed SIC as essential to high-quality medical practice regardless of specialty, and believed training in SIC skills and palliative care should be required in medical school curricula. Students preferred to learn and practice these skills using frameworks, particularly in real-world situations. Students recognized the expertise of palliative care specialists and described them as a scarce, often misunderstood resource in health care. Students reported it was mostly "luck" if they were included in family meetings and observed good role models. Finally, students desired practice in debriefing after difficult and emotional situations. CONCLUSIONS: This study confirms long-standing themes on students' experiences with SIC and palliative care topics, including feeling inadequately prepared to care for seriously ill patients as future physicians. Our study collected students' perspectives as actionable data to develop recommendations for curricular change. Collaborative faculty also created recommendations based on the focus group data for immediate and ongoing SIC and palliative care curricular change in Massachusetts, which can apply to medical schools nationwide.
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Comunicación , Curriculum , Educación de Pregrado en Medicina , Grupos Focales , Cuidados Paliativos , Estudiantes de Medicina , Humanos , Massachusetts , Educación de Pregrado en Medicina/métodos , Estudiantes de Medicina/psicología , Masculino , Femenino , Investigación Cualitativa , Adulto , Enfermedad Crítica/terapia , Enfermedad Crítica/psicologíaRESUMEN
Background: Brewer Ìs spent grain (BSG) is a biomass by-product generated in large volumes during industrial beer production. BSG has become a growing environmental problem, as most breweries discard it inappropriately, negatively impacting the environment. Alternatives for the exploitation of this by-product have consisted of elaborating food supplements for farm animals, obtaining biofuels, developing adsorbents, and obtaining substances for the food industry. However, the high moisture content in BSG (approximately 70%), poses a significant challenge in exploring various reuse alternatives. Therefore, the implementation of a pre-drying process becomes essential. Objective: This study aimed to analyze the BSG drying kinetics at different temperatures and the effect of the drying temperature on the physical properties and the content of bioactive compounds. Methods: BSG samples were dried at different temperatures (50, 60, 70, 80, 90, and 105°C) and analyzed for their moisture ratio, water activity, total polyphenol content (TPC), and DPPH (1,1-diphenyl-2-picrylhydrazil) radical scavenging activity. Also, four kinetics models were fitted to the drying data. Results:It was determined that the effective diffusivity was between 5.23x10
Antecedentes: El Bagazo residual de malta (BSG por sus siglas en inglés) es un subproducto biomásico generado en grandes volúmenes durante la producción industrial de cerveza. El BSG se ha convertido en un creciente problema para el medio ambiente, debido a que la mayoría de las cervecerías descartan inapropiadamente este residuo generando un impacto negativo al ambiente. Las alternativas para el aprovechamiento de este subproducto han consistido especialmente en la elaboración de suplementos alimenticios para animales de granja, obtención de biocombustibles, desarrollo de adsorbentes y obtención de productos para la industria alimentaria. Sin embargo, el alto contenido de humedad (~70%) del BSG representa un reto para el desarrollo de diferentes alternativas de reutilización, por lo que se hace necesario un proceso de secado previo. Objetivos: En este estudio se analizó la cinética de secado del BSG a diferentes temperaturas y el efecto de la temperatura de secado sobre sus propiedades físicas y contenido de compuestos bioactivos. Métodos: Las muestras de BSG fueron secadas a diferentes temperaturas (50, 60, 70, 80, 90 y 105°C) y analizadas en términos de razón de humedad, actividad acuosa, contenido de polifenoles totales (TPC) y actividad secuestradora del radical DPPH. Además, se ajustaron 4 modelos cinéticos a los datos de secado. Resultados: Se determinó que la difusividad efectiva del BSG varió entre 5.23x10
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Humanos , Malta , Temperatura , Cerveza , Cinética , BiomasaRESUMEN
Introduction: Despite recent educational advances, the need for a national standardized primary palliative care curriculum for health professions students remains evident. Methods: An interprofessional leadership team developed a set of core learning objectives built on previously published competencies. A survey was then sent to palliative care experts for feedback and consensus. Results: Twenty-eight of 31 objectives met a 75% consensus threshold, 2 were combined with others, and 12 were refined based on survey feedback. Discussion: With interprofessional input at all stages, we finalized a comprehensive list of 26 learning objectives for a primary palliative care curriculum targeting health professions students. These objectives will be widely available through an online course but can also be adopted for use by individual educators across health professions institutions. These objectives and related curriculum are critical to producing practice-ready clinicians who are prepared to care for the burgeoning population of seriously ill patients.
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Enfermería de Cuidados Paliativos al Final de la Vida , Cuidados Paliativos , Humanos , Curriculum , Empleos en Salud , Relaciones Interprofesionales , EstudiantesRESUMEN
Introducción: La pandemia de COVID-19 evidenció la importancia de los trabajadores esen-ciales de la salud. Objetivo: Estimar la ocurrencia de la infección por el virus Sars_CoV2 en funcionarios de un hospital, antes y después de implementación del programa de vacunación institucional y la fracción preventiva atribuible a la vacunación. Material y métodos: Estudio de cohorte histórica, teniendo como punto de inicio la fecha del primer funcionario diagnosticado con la Covid19 en el Hospital. Alrededor de mil traba-jadores fueron examinados, durante el periodo de estudio comprendido entre junio de 2020 y octubre 2021. Se utilizó el estadístico de Kaplan-Meier, para comparar la velocidad de infección y la fracción preventiva atribuible al programa de vacunación. Resultados. Hubo diferencias estadísticamente significativas en la reducción de casos según tipo de trabajo, los trabajadores asistenciales experimentaron una reducción del 58,1%, de 124 a 52 y la diferencia en la mediana de la velocidad de infección, antes y después, Log Rank = 127,4 gl = 1 p = 0,000; los administrativos 51,7% de 29 a 14, mediana log Rank = 34,4 gl = 1 p = 0,000, y los operativos 45,5% de 11 a 6, mediana Log Rank = 13,5 gl = 1 p = 0,000. La fracción atribuible preventiva entre los asistenciales fue 47,5% (37,454,9); 85,2% (77,788,9) en administrativos y una reducción no significativa de 43,6% (-20,7, 63,2) en operativos. Conclusiones: Los trabajadores asistenciales tienen un riesgo alto de contraer la infección por Sars_CoV2. Fue una acertada decisión vacunar a todos los trabajadores del hospital, el impacto es demostrable.
Introduction: The COVID-19 pandemic highlighted the importance of essential health care workers.Objective: To estimate the occurrence of Sars_CoV2 virus infection in hospital staff before and after implementation of the institutional vaccination program and the preventive fraction attributable to vaccination. Material and methods: Historical cohort study, having as starting point the date of the first employee diagnosed with Covid19 in the Hospital. About one thousand workers were exa-mined, during the study period from June 2020 to October 2021. The Kaplan-Meier statistic was used to compare the infection, rate and the preventive fraction attributable to the vac-cination program. Results: There were statistically significant differences in the reduction of cases according to type of work, with the assistential workers experiencing a reduction of 58.1%, from 124 to 52 and the difference in median infection rate, before and after, Log Rank = 127.4 gl = 1 p = 0.000; the administrative 51.7% from 29 to 14, median Log Rank = 34.4 gl = 1 p = 0.000, and the operatives 45.5% from 11 to 6, median Log Rank = 13.5 gl = 1 p = 0.000. The preventive attributable fraction among assistants was 47.5% (37.4-54.9); 85.2% (77.7-88.9) in adminis-trative and a non-significant reduction of 43.6% (-20.7, 63.2) in operatives.Conclusions: Healthcare workers are at high risk of contracting Sars_CoV2 infection. It was a wise decision to vaccinate all hospital workers, the impact is demonstrable.
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Humanos , Adulto , Persona de Mediana Edad , Personal de Salud , Vacunas contra la COVID-19 , COVID-19 , Vacunas , Programas de Inmunización , COVID-19/prevención & controlRESUMEN
Welsh onion (Allium fistulosum) leaves contain several bioactive compounds that can be extracted and used to develop new value-added products (e.g., functional foods and dietary supplements). In the current work, optimal ultrasound-assisted extraction (UAE) conditions to obtain extracts with high polyphenols content and DPPH (1,1-diphenyl-2-picrylhydrazil) scavenging activity were identified using response surface methodology. A complete 3k factorial design was used to evaluate the effect of different variables of the UAE (extraction temperature, time, and ethanol concentration) on the polyphenols content and the DPPH scavenging activity of the extracts. The best conditions for UAE to reach both the highest values of total polyphenols content (51.78 mg GAE/100 g) and DPPH scavenging activity (34.07 mg Trolox equivalents/100 g) were an extraction temperature of 60 °C, time of 10 min, and ethanol concentration of 70% v/v. The antioxidant activity of the extracts obtained at the optimal conditions was also evaluated by 2,2'-azino-bis-3-ethylbenzthiazoline-6-sulphonic acid (ABTS) and ferric reducing antioxidant power (FRAP) assays obtaining values of 155.51 ± 2.80 µM Trolox/100 g and 1300.21 ± 65.55 µM Trolox/100 g, respectively. Moreover, these extracts were characterized by UHPLC-ESI+-Orbitrap-MS analysis finding that cyanidin (6.0 mg/kg) was the phenolic compound found in the highest amount followed by quercetin-3-glucoside (4.4 mg/kg).
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BACKGROUND: Propolis has been considered a highly valuable material due to its therapeutic properties. However, in Colombia, the commercialization of propolis is limited not only by low production but also by the little knowledge about its efficient extraction. Therefore, finding an optimal and economical extraction method to obtain propolis is a necessity for beekeepers that would open new possibilities for industrial use and, therefore, for the market. OBJECTIVES:The objective of this study was to evaluate a conventional and ultrasound-assisted extraction method, seeking to obtain the highest yield and a high amount of content of bioactive compounds in propolis extracts. METHODS: The extraction was carried out for three crude propolis from different types of bees: Tetragoniscaangustula or Angelita (ANG), Meliponaeburnea or Melipona(MEL), and Scaptotrigonaspp (SCT). The extracts were characterized by color, pH, visual appearance, solid content, antioxidant capacity, total polyphenol content, and bacterial inhibition capacity. RESULTS: The highest extraction performance was obtained when the ultrasound-assisted method was used, especially for the ANG extract, which in addition to presenting inhibition for gram-negative (E. coli) and gram-positive (S. Aureus) bacteria, had the best antioxidant activity with a value of 545 mg GAE / 100 g of sample and total polyphenol content of 1,884 mg GAE / 100 g of sample. CONCLUSIONS: Ultrasound-assisted extraction can be considered a low-cost alternative to increase the extraction performance of crude propolis, together with its total polyphenol content and antioxidant capacity, without altering its physical properties
ANTECEDENTES: El propóleos ha sido considerado un material de alto valor por sus propiedades terapéuticas. Sin embargo, en Colombia la comercialización de propóleos está limitada no solo por la baja producción sino también por el incipiente conocimiento sobre la extracción eficiente de este. Por ello, encontrar un método de extracción óptimo y económico para la obtención de propóleos es una necesidad para los apicultores que abriría nuevas posibilidades para el uso industrial y por tanto para el mercado. OBJETIVOS: El objetivo de este estudio fue evaluar un método de extracción convencional y asistido por ultrasonido (US) buscando el mayor rendimiento y alto contenido de compuestos bioactivos en extractos de propóleos. MÉTODOS: La extracción se realizó para tres propóleos crudos de diferentes tipos de abejas Tetragonisca angustula o Angelita(ANG), Melipona eburnea o Melipona (MEL) y Scaptotrigona spp (SCT). Todos los extractos se caracterizaron por su color, pH, apariencia visual, contenido de sólidos, capacidad antioxidante, contenido total de polifenoles y capacidad de inhibición bacteriana. RESULTADOS: El mayor rendimiento de extracción se obtuvo cuando se usó el método asistido por ultrasonido y específicamente para el extracto ANG, que además de presentar inhibición para bacterias gram negativas (E. coli) y gram positivas (S. Aureus), tuvo la mejor actividad antioxidante con un valor de 545 mg GAE / 100 g de muestra y contenido total de polifenoles de 1884 mg GAE / 100 g de muestra. CONCLUSIONES: La extracción asistida por ultrasonido puede considerarse una alternativa de bajo costo para aumentar el rendimiento de extracción del propóleos crudo, así como su contenido total de polifenoles y capacidad antioxidante sin alterar sus propiedades físicas
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Humanos , Própolis/química , Staphylococcus aureus/efectos de los fármacos , Escherichia coli/efectos de los fármacos , Antioxidantes/farmacología , Ultrasonido , Abejas , Pruebas de Sensibilidad Microbiana , Antibacterianos/farmacologíaRESUMEN
Bunching green onion is an Allium species that has been widely used in food flavorings and seasonings. This vegetable experiences a rapid loss of quality during storage due to physiological changes and microbial spoilage. In the current work, the single and combined effect of mild-heat treatment (55 °C for 60 s) and alginate edible coatings on the quality preservation of minimally processed bunching green onions was studied. Control and treated samples were stored at 4 °C for 15 days and examined periodically in terms of their respiration rate, weight loss, pH, soluble solids content, firmness, total polyphenol content, antioxidant activity, microbial count, decay ratio, and overall visual quality. The results showed that the combination of mild heat and alginate edible coatings was the most effective approach to slow down the respiration rate and the incidence of decay in the minimally processed bunching green onions. In addition, the treatments with alginate coating alone or combined with mild-heat treatment showed the best performance for maintaining the overall visual quality of the products during the storage.
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PURPOSE: To understand the healthcare team's perceptions of the negative consequences of suboptimal communication and their recommendations to improve communication with patients and families who have Limited English Proficiency (LEP) in the Intensive Care Unit (ICU). MATERIALS AND METHODS: We performed a qualitative study using semi-structured interviews of physicians, nurses, and interpreters from 3 ICUs at Mayo Clinic Rochester, between November 2017 and April 2018. RESULTS: We identified 5 consequences of suboptimal communication: 1) Suboptimal assessment and treatment of patient symptoms, 2) Unmet patient and family expectations, 3) Decreased patient autonomy, 4) Unmet end of life wishes and 5) Clinician Distress. Recommendations to improve communication include: 1) Education and training for patients,families, clinicians and interpreters, 4) Greater integration of interpreters into the ICU team 5) Standardized timeline for goals of care conversations with patients and families with LEP. CONCLUSIONS: Patients with LEP are at risk of experiencing suboptimal communication with the healthcare team in the ICU. There are several educational and quality improvement strategies that ICUs and institutions can take to mitigate these issues.
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Dominio Limitado del Inglés , Comunicación , Barreras de Comunicación , Humanos , Unidades de Cuidados Intensivos , Grupo de Atención al Paciente , PercepciónRESUMEN
Edible coatings are attractive strategies for blueberries postharvest preservation. In this work, carvacrol/alginate coatings were developed for application on Andean blueberries. Coating formulations were prepared based on blends of sodium alginate (2% w/v), carvacrol (0%, 0.03%, 0.06% or 0.09%), glycerol, and water and applied to the fruits by dip-coating. Then, the fruits were immersed in a calcium batch to induce a crosslink reaction. Changes in the physicochemical and microbiological characteristics of the blueberries were monitored during 21 days of storage at 4 °C. Coated blueberries were better preserved throughout the 21 days of storage because of their lower respiration rate and water loss, in comparison with the uncoated ones. Besides, the coatings enhanced the appearance and the gloss of the fruits. Control fruits showed a significant decrease in the firmness, while, in the coated fruits, this critical postharvest quality was preserved during the entire storage. Coating formulations with 0.09% of carvacrol was the most effective in preventing mesophilic aerobic bacteria and molds/yeasts growth on the fruits during the storage. Edible carvacrol/alginate coatings can be considered as a useful alternative to complement the benefits of refrigerated storage by delaying post-harvest spoilage of Andean blueberries.
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Edible coatings and films are appealing strategies for the postharvest management of blueberries. In the current work, alginate and alginate/cellulose nanofibril (CNF) edible coatings crosslinked with calcium chloride were developed for application on Andean blueberry (a promissory wild blueberry). Cocoa by-products were valorized through the isolation of their CNFs, and these were incorporated in the edible coatings. Edible coating formulations were based on blends of alginate (2% w/v), CNFs (0%, 0.1%, or 0.3%), glycerol, and water. In addition, stand-alone films were prepared, and their light and water vapor barrier properties were studied before applying the coating on the fruit surface. The results show that the addition of CNFs caused a significant decrease in the transparency and the water vapor permeability of the alginate films. After applying on the Andean blueberry fruits, the alginate and alginate/CNF coatings enhanced the appearance and the firmness of the fruits. Moreover, they significantly reduced the respiration rate and the water loss of the Andean blueberries throughout the 21 days of refrigerated storage. Alginate and alginate/CNFs coatings may be considered a useful alternative for the delay of the postharvest deterioration of Andean blueberries.
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Objectives: This study examined the experiences of women receiving high-risk cell-free DNA (cfDNA) screening results, with particular focus on decisional satisfaction after receiving high-risk, false, or inconclusive results. It is already known that cell-free DNA screening is rapidly expanding in the clinical practice. A growing number of women are offered cfDNA screening for an increasingly broad range of chromosomal and microdeletion syndromes. However, research shows that the very low false positive rate attributed to cfDNA screening for trisomy 21 does not apply to other conditions.Methods: As a part of the larger study on patient experiences, 40 semistructured telephone interviews were conducted with women who were, or had recently been, pregnant and received high-risk (n = 15), false positive/negative (n = 20), or inconclusive (n = 5) results from cfDNA screening.Results: One third of participants would not elect to have cfDNA screening in a future pregnancy, and another third would only have the screen under particular circumstances or if the scope of the panel was limited. Many women reported feeling misled by the information they received prior to accepting cfDNA screening or receiving their results.Conclusions: Study participants described issues with the clinical dialog when cfDNA screening is offered; when results are returned; and problems with the availability of information about the existence of false positives. These reports suggest that inadequate pretest discussion contributes to women's experience of decisional regret after receiving high-risk, false positive, or inconclusive results. Given the confusion about cfDNA screening accuracy, the prevalence of follow-up invasive tests, and the number of women who reported that they regretted choosing cfDNA screening, the mode of offering cfDNA should be reassessed.
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Conducta de Elección , Asesoramiento Genético/normas , Pruebas Prenatales no Invasivas , Adulto , Emociones , Femenino , Asesoramiento Genético/psicología , Humanos , Valor Predictivo de las Pruebas , Embarazo , Investigación CualitativaRESUMEN
Andean blueberry is a promissory fruit native to South America. The current work aimed to characterize starches isolated from Colombian native potatoes and to evaluate the effect of the application of starch edible coatings on the changes in the physicochemical quality parameters of the Andean blueberry during storage. Starches were isolated from three different potatoes varieties (pacha negra, mora, and alcarrosa) and characterized. Then, starch-based coatings were applied to Andean blueberries, and the changes in their quality parameters were monitored during 12 days of storage. Despite the phenotypical differences in the starch sources used, starches were similar in terms of their granule morphology, amylose content (~19%), crystallinity degree (~46%), and thermal properties. Coatings were able to reduce the gaseous exchange of the fruit, and, thus, the respiration rate of all coated blueberries was ~27% lower compared to the uncoated fruits (p < 0.05) at the end of the storage. While the application of starch coatings did not prevent water loss, all samples reached water loss of up 20%. Besides, the coated fruits showed soluble solids contents ~14% higher compared to the control one, as well as better bright and firmness. The new edible coatings can help add value to the Andean blueberry.
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OBJECTIVES: Research indicates that the increasing population of over 25 million people in the United States who have limited English proficiency experience differences in decision-making and subsequent care at end of life in the ICU when compared with the general population. The objective of this study was to assess the perceptions of healthcare team members about the factors that influence discussions and decision-making about end of life for patients and family members with limited English proficiency in the ICU. DESIGN: Qualitative study using semistructured interviews with ICU physicians, nurses, and interpreters. SETTING: Three ICUs at Mayo Clinic Rochester. SUBJECTS: Sixteen ICU physicians, 12 ICU nurses, and 12 interpreters. INTERVENTION: None. MEASUREMENTS AND MAIN RESULTS: We conducted 40 semistructured interviews. We identified six key differences in end-of-life decision-making for patients with limited English proficiency compared with patients without limited English proficiency: 1) clinician communication is modified and less frequent; 2) clinician ability to assess patient and family understanding is impaired; 3) relationship building is impaired; 4) patient and family understanding of decision-making concepts (e.g., palliative care) is impaired; 5) treatment limitations are often perceived to be unacceptable due to faith-based and cultural beliefs; and 6) patient and family decision-making styles are different. Facilitators of high-quality decision-making in patients with limited English proficiency included: 1) premeeting between clinician and interpreter; 2) interpretation that communicates empathy and caring; 3) bidirectional communication of cultural perspectives; 4) interpretation that improves messaging including appropriate word choice; and 5) clinician cultural humility. CONCLUSIONS: End-of-life decision-making is significantly different for ICU patients with limited English proficiency. Participants identified several barriers and facilitators to high-quality end-of-life decision-making for ICU patients and families with limited English proficiency. Awareness of these factors can facilitate interventions to improve high-quality, compassionate, and culturally sensitive decision-making for patients and families with limited English proficiency.
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Actitud del Personal de Salud , Barreras de Comunicación , Toma de Decisiones , Familia , Unidades de Cuidados Intensivos , Dominio Limitado del Inglés , Grupo de Atención al Paciente , Cuidado Terminal , Adulto , Anciano , Femenino , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Estados Unidos , Adulto JovenRESUMEN
Extracorporeal membrane oxygenation (ECMO) is a new technology used to rescue patients with severe circulatory or respiratory failure and help bridge them to recovery or to definitive therapies like device implantation or organ transplantation. The increasing availability and success of ECMO has generated numerous ethical questions about its use and potential misuse. This commentary on a case of a patient who is no longer a candidate for transplant but wishes to continue ECMO identifies strategies clinicians can use to reconcile competing responsibilities.
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Toma de Decisiones Conjunta , Oxigenación por Membrana Extracorpórea/ética , Privación de Tratamiento/ética , Comunicación , Humanos , Masculino , Autonomía Personal , Autonomía Profesional , Adulto JovenRESUMEN
Increased prenatal diagnoses of sex chromosome aneuploidies (SCAs) amid limited knowledge of their prognoses heighten the need to understand how families contend with the implications of an SCA. To explore the experiences of parents and individuals who received a genetic diagnosis of an SCA (excluding Turner syndrome), we conducted semistructured qualitative telephone interviews with 43 participants affected by these conditions. Parents (n = 35) and individuals (n = 8) expressed almost unanimous interest in more optimistic portrayals of their condition from their providers, even when the prognosis is uncertain. While some participants reported success in receiving accurate information from their provider and identifying supportive resources, numerous families received outdated or misleading information about their condition and lacked direction in accessing follow-up care and support. Parents desire greater coordination of their child's medical care and access to care that approaches an SCA holistically. Opportunities remain to improve the diagnosis and care of individuals with SCAs.
Asunto(s)
Aneuploidia , Actitud Frente a la Salud , Padres/psicología , Trastornos de los Cromosomas Sexuales del Desarrollo Sexual/psicología , Adolescente , Adulto , Niño , Preescolar , Femenino , Humanos , Lactante , Entrevistas como Asunto , Masculino , Adulto JovenRESUMEN
BACKGROUND:: Socioeconomic status (SES) is an important determinant of disparities in health care and may play a role in end-of-life care and decision-making. The SES is difficult to retrospectively abstract from current electronic medical records and data sets. OBJECTIVE:: Using a validated SES measuring tool derived from home address, the HOUsing-based SocioEconomic Status index, termed HOUSES we wanted to determine whether SES is associated with differences in end-of-life care and decision-making. DESIGN/SETTING/PARTICIPANTS:: This cross-sectional study utilized a cohort of Olmsted County adult residents admitted to 7 intensive care units (ICUs) at Mayo Rochester between June 1, 2011, and May 31, 2014. MEASUREMENTS:: Multiple variables that reflect decision-making and care at end of life and during critical illness were evaluated, including presence of advance directives and discharge disposition. The SES was measured by individual housing-based SES index (HOUSES index; a composite index derived from real property as a standardized z-score) at the date of admission to the ICU which was then divided into 4 quartiles. The greater HOUSES, the higher SES, outcomes were adjusted for age, 24-hour Acute Physiology and Chronic Health Evaluation III score, sex, race/ethnicity, and insurance. RESULTS:: Among the eligible 4134 participants, the addresses of 3393 (82%) were successfully geocoded and formulated into HOUSES. The adjusted odds ratios comparing HOUSES 1 versus 2, 3, and 4 demonstrated lower likelihood of advance directives -0.77(95% CI: 0.63-0.93) and lower likelihood of discharge to home -0.60(95% CI: 1.0.5-0.72). CONCLUSION:: Lower SES, derived from a composite index of housing attributes, was associated with lower rates of advance directives and lower likelihood of discharge to home.