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Ataxin-2 (ATXN2) is a gene implicated in spinocerebellar ataxia type II (SCA2), amyotrophic lateral sclerosis (ALS) and Parkinsonism. The encoded protein is a therapeutic target for ALS and related conditions. ATXN2 (or Atx2 in insects) can function in translational activation, translational repression, mRNA stability and in the assembly of mRNP-granules, a process mediated by intrinsically disordered regions (IDRs). Previous work has shown that the LSm (Like-Sm) domain of Atx2, which can help stimulate mRNA translation, antagonizes mRNP-granule assembly. Here we advance these findings through a series of experiments on Drosophila and human Ataxin-2 proteins. Results of Targets of RNA Binding Proteins Identified by Editing (TRIBE), co-localization and immunoprecipitation experiments indicate that a polyA-binding protein (PABP) interacting, PAM2 motif of Ataxin-2 may be a major determinant of the mRNA and protein content of Ataxin-2 mRNP granules. Experiments with transgenic Drosophila indicate that while the Atx2-LSm domain may protect against neurodegeneration, structured PAM2- and unstructured IDR- interactions both support Atx2-induced cytotoxicity. Taken together, the data lead to a proposal for how Ataxin-2 interactions are remodelled during translational control and how structured and non-structured interactions contribute differently to the specificity and efficiency of RNP granule condensation as well as to neurodegeneration.
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Ataxina-2 , Proteínas de Drosophila , Drosophila melanogaster , RNA Mensageiro , Ribonucleoproteínas , Ataxina-2/genética , Ataxina-2/metabolismo , Animais , Humanos , Ribonucleoproteínas/genética , Ribonucleoproteínas/metabolismo , Proteínas de Drosophila/genética , Proteínas de Drosophila/metabolismo , Drosophila melanogaster/genética , Drosophila melanogaster/metabolismo , RNA Mensageiro/genética , RNA Mensageiro/metabolismo , Proteínas de Ligação a Poli(A)/metabolismo , Proteínas de Ligação a Poli(A)/genética , Animais Geneticamente Modificados , Grânulos Citoplasmáticos/metabolismo , Grânulos Citoplasmáticos/genética , Esclerose Lateral Amiotrófica/genética , Esclerose Lateral Amiotrófica/metabolismo , Biossíntese de Proteínas , Proteínas de Ligação a RNA/genética , Proteínas de Ligação a RNA/metabolismo , Proteínas Intrinsicamente Desordenadas/genética , Proteínas Intrinsicamente Desordenadas/metabolismo , Proteínas do Tecido Nervoso/genética , Proteínas do Tecido Nervoso/metabolismo , Proteínas de Ligação a DNARESUMO
AIM: To explore the views of neonatal intensive care nursing staff on the deliverability of a novel genetic point-of-care test detecting a genetic variant associated with antibiotic-induced ototoxicity. DESIGN: An interpretive, descriptive, qualitative interview study. METHODS: Data were collected using semi-structured interviews undertaken between January and November 2020. Participants were neonatal intensive care nursing staff taking part in the Pharmacogenetics to Avoid Loss of Hearing trial. RESULTS: Thematic analysis resulted in four themes: perceived clinical utility; the golden hour; point-of-care device; training and support. Recommendations were made to streamline the protocol and ongoing training and support were considered key to incorporating the test into routine care. CONCLUSION: Exploring the views of nurses involved in the delivery of the point-of-care test was essential in its implementation. By the study endpoint, all participants could see the value of routine clinical introduction of the point-of care test. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Nurses are in a key position to support the delivery of point-of-care genetic testing into mainstream settings. This study has implications for the successful integration of other genetic point-of-care tests in acute healthcare settings. IMPACT: The study will help to tailor the training and support required for routine deployment of the genetic point-of-care test. The study has relevance for nurses involved in the development and delivery of genetic point-of-care tests in other acute hospital settings. REPORTING METHOD: This qualitative study adheres to the Standards for Reporting Qualitative Research EQUATOR guidelines and utilizes COREQ and SRQR checklists. PATIENT OR PUBLIC CONTRIBUTION: All staff working on the participating neonatal intensive care units were trained to use the genetic point-of-care test. All inpatients on the participating units were eligible to have testing via the point-of-care test. The Pharmacogenetics to Avoid Loss of Hearing Patient and Public Involvement and Engagement group provided valuable feedback. TRIAL AND PROTOCOL REGISTRATION: Registered within the University of Manchester. Ethics approval reference numbers: IRAS: 253102 REC reference: 19/NW/0400. Also registered with the ISRCTN ref: ISRCTN13704894.
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Antibacterianos , Unidades de Terapia Intensiva Neonatal , Testes Imediatos , Pesquisa Qualitativa , Humanos , Recém-Nascido , Antibacterianos/efeitos adversos , Feminino , Masculino , Ototoxicidade , Atitude do Pessoal de Saúde , Recursos Humanos de Enfermagem Hospitalar , Adulto , Sistemas Automatizados de Assistência Junto ao Leito , Testes GenéticosRESUMO
ABSTRACT: Brown, G, Massard, T, Wignell, T, McCall, A, and Duffield, R. Match exposure, consecutive match number, and recovery days affect match running during international women's soccer tournaments. J Strength Cond Res 38(3): 577-583, 2024-To determine the influence of tournament-specific factors (match exposure, consecutive matches, and days between matches) on match running in women's international soccer players (footballers), 28 players from 1 national team were observed over 4 international tournaments using 10 Hz global positioning system units. Linear mixed models with a forward selection approach were used to analyze the collective effect of tournament-specific factors of match exposure (playing time), consecutive matches (count), days between matches (count) and time on pitch on relative (min -1 ) match running metrics (total distance, high-speed running, very high-speed running, accelerations, and decelerations), and the change in these metrics between halves. The significance level was set at p < 0.05. Days between matches were included in the final models for total distance ( p < 0.0001), high-speed running ( p = 0.002), very high-speed running ( p = 0.025), and change in accelerations ( p < 0.0001) and decelerations ( p = 0.002). Prior match exposure was included in the models for total distance ( p = 0.021), change in total distance ( p < 0.0001), and change in high-speed running ( p = 0.0008). Consecutive match number was included in the model for deceleration ( p = 0.030), change in very high-speed running ( p = 0.016), change in acceleration ( p < 0.0001), and change in deceleration ( p < 0.0001). Time on pitch was included in the final total distance ( p = 0.044), high-speed running ( p < 0.0001), acceleration ( p < 0.0001), and deceleration ( p = 0.0003) models. Overall, reduced match running throughout tournaments was associated with increased time on pitch and ≤3 days between matches. Increasing match exposure and more time between matches minimizes reductions in match running between halves. Practitioners can use these variables to inform player monitoring during international soccer tournaments and on return to clubs.
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Desempenho Atlético , Corrida , Futebol , Humanos , Feminino , Aceleração , Sistemas de Informação GeográficaRESUMO
ABSTRACT: Brown, GA, Massard, T, Wignell, T, McCall, A, and Duffield, R. Monitoring training load and wellness of female footballers transitioning between club and national teams. J Strength Cond Res 37(11): 2235-2240, 2023-This study described the change in training and match internal loads, plus perceptual wellness during the transition between club and national teams (NTs) for female international footballers (soccer). Session count, session rating of perceived exertion (s-RPE), and perceptual wellness data were collected from 42 players from 1 NT between 2019 and 2021 for 7 NT tournaments. Data were collated into 7-day (1 week) microcycles to compare the 2 weeks before the first week of NT (transition in: NT-2, NT-1, NT1); and separately from the final NT week to the next 2 weeks in clubs (transition out: NTFinal, NT+1, NT+2). Data were analyzed using linear mixed-models, with session count, s-RPE or wellness as the outcome variable, week as the fixed effect, player name, and tournament as random effects. Tukey's adjusted post-hoc comparisons and Cohen's d effect sizes (ES) were compared between weeks. Significance level was set at p < 0.05. During the transition into NT, training and total session counts increased (p < 0.0001, ES > 0.67), training s-RPE increased (p = 0.012, ES = 0.35), whereas match count and s-RPE decreased (p < 0.05, ES < -0.34). During the transition out of NT, there were decreases in training session count (p < 0.05, ES < -0.37), match count, and total session count (p < 0.0001, ES < -0.86), and match and total s-RPE (p < 0.0001, ES < -0.63). Perceived wellness was not significantly different throughout (p > 0.05, ES = -0.34 to 0.35). Thus, training and match exposures differ between club and NTs, demonstrating these unique transitional periods require simple and effective load monitoring to inform training and recovery prescription when changing between club and NTs.
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Esforço Físico , Futebol , Humanos , Feminino , Modelos LinearesRESUMO
ISSUE ADDRESSED: Firefighting is physically and mentally taxing and recruits are expected to have optimal health and fitness. However, physical fitness tends to decline following initial training, placing firefighters at an increased risk for stress and injury. Efforts are needed to engage and support firefighters in maintaining adequate health and fitness to withstand the rigorous demands of their occupation. This study examined the feasibility of TARP, a pragmatic strength and conditioning intervention for metropolitan-based firefighters, delivered in collaboration with a professional National Rugby League club. METHODS: A mixed-methods approach was utilised to examine program implementation, recruitment and sample characteristics, intervention satisfaction and acceptability, and participants' response to the intervention. Evaluation measures included field notes taken during steering committee meetings, participant flow data, baseline and follow-up outcome measures, self-report questionnaires, and telephone interviews with a sample of participants. RESULTS: Participants (N = 113) were predominantly men (82%) with a mean age of 43 ± 9.3 years and BMI of 26.6 ± 2.9 kg/m2 . Program satisfaction was high (95% very satisfied or somewhat satisfied) among program completers (42% retention). Key strengths of the program included delivery through the professional sports club, quality of facilities and equipment, and scheduling flexibility. Future programs should consider incorporating education or training to support behaviour change maintenance and strategies to retain participants at follow-up. CONCLUSIONS: Results provide valuable insights into the design and delivery of interventions for firefighters and demonstrate the importance of strong partnerships between community stakeholders.
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Bombeiros , Masculino , Humanos , Adulto , Pessoa de Meia-Idade , Feminino , Estudos de Viabilidade , Exercício Físico , AtletasRESUMO
BACKGROUND & AIMS: This study explored the link between duodenal eosinophils and mast cells in patients with functional dyspepsia (FD). METHODS: MEDLINE (PubMed) and Embase electronic databases were searched until June 2021 for case-control studies reporting duodenal eosinophils and mast cells in FD. Pooled standardized mean difference (SMD), odds ratio, and 95% CIs of duodenal eosinophils and mast cells in FD patients and controls were calculated, using a random-effects model. RESULTS: Twenty-two case-control studies with 1108 FD patients and 893 controls were identified. Duodenal eosinophils (SMD, 1.29; 95% CI, 0.85-1.73; P = .0001) and mast cells (SMD, 2.11; 95% CI, 1.14-3.07; P = .0001) were increased in FD patients compared with controls. Substantial heterogeneity was found (I2 = 93.61, P = .0001; and I2 = 96.69, P = .0001, respectively) and visual inspection of funnel plots confirmed publication bias. Degranulation of duodenal eosinophils was significantly higher in FD patients compared with controls (odds ratio, 3.78; 95% CI, 6.76-4.48; P = .0001), without statistically significant heterogeneity. We conducted a sensitivity analysis for duodenal eosinophils, by including only high-quality studies, and the results remained unchanged (SMD, 1.73; 95% CI, 1.06-2.40; P = .0001), with substantial heterogeneity. Postinfectious FD patients had increased duodenal eosinophils compared with controls (SMD, 3.91; 95% CI, 1.32-6.51; P = .001) and FD patients without any history of infection (SMD, 1.42; 95% CI, 0.88-1.96; P = .001). Helicobacter pylori-negative FD patients had significantly higher duodenal eosinophils compared with controls (SMD, 3.98; 95% CI, 2.13-5.84; P = .0001), with substantial heterogeneity. No significant difference in duodenal eosinophils was seen according to FD subtypes. CONCLUSIONS: This meta-analysis suggests a link between duodenal microinflammation and FD. However, the quality of evidence is very low, largely owing to the unexplained heterogeneity and serious risk of publication bias in all comparative analyses. Thus, causality remains uncertain and further studies are required.
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Dispepsia , Eosinofilia , Estudos de Casos e Controles , Duodeno , Eosinófilos , Humanos , MastócitosRESUMO
OBJECTIVES: Due to the nature of firefighting, most effective cooling interventions to reduce heat strain and optimise performance are not practically viable. This study quantified the effects of two practical cooling strategies, co-designed with subject-matter experts, on physiological strain and physical, perceptual, and visuo-motor performance during simulated firefighting in the heat. DESIGN: Randomised cross-over. METHODS: On three occasions 14 firefighters completed an 80-min simulation in a hot-humid environment (32.0[0.9]°C, 59[3]%RH) including two 20-min firefighting tasks in full protective clothing, each followed by 20-min seated recovery. Recovery involved removal of protective clothing and one of three interventions - control (CON; ambient-temperature water consumption), basic (BASIC; cool-water consumption, ambient-forearm immersion/towels, fan), and advanced (ADV; ice-slushy consumption, cool-forearm immersion/ice packs, misting-fan). Thermal (core temperature) and cardiovascular (heart rate, arterial pressure) responses were measured throughout, whilst physical (handgrip/balance), visuo-motor (reaction time/memory recall) and perceptual (fatigue/thermal sensation/comfort) measures were assessed pre- and post-trial. RESULTS: Compared to CON, core temperature was lower in BASIC and ADV following the second task (ADV: 37.7[0.4]; BASIC: 38.0[0.4]; CON: 38.3[0.4]°C) and recovery protocol (ADV: 37.5[0.3]; BASIC: 37.7 [0.3] CON: 38.3[0.4]°C). This was paralleled by lowered heart rate, rate pressure product, and thermal sensation following the recovery protocols, in the ADV and BASIC condition compared to CON (p < .05). No physical or visuo-motor outcomes differed significantly between conditions. CONCLUSION: Whilst these observations need to be extended to field conditions, our findings demonstrate that two novel cooling interventions developed in collaboration with subject-matter experts offered benefits for reducing thermal strain and optimising firefighter safety.
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Bombeiros , Temperatura Baixa , Força da Mão , Temperatura Alta , Humanos , GeloRESUMO
OBJECTIVES: Endotracheal suction is an invasive airway clearance technique used in mechanically ventilated children. This article outlines the methods used to develop appropriate use criteria for endotracheal suction interventions in mechanically ventilated paediatric patients. METHODS: The RAND Corporation and University of California, Los Angeles Appropriateness Method was used to develop paediatric appropriate use criteria. This included the following sequential phases of defining scope and key terms, a literature review and synthesis, expert multidisciplinary panel selection, case scenario development, and appropriateness ratings by an interdisciplinary expert panel over two rounds. The panel comprised experts in the fields of paediatric and neonatal intensive care, respiratory medicine, infectious diseases, critical care nursing, implementation science, retrieval medicine, and education. Case scenarios were developed iteratively by interdisciplinary experts and derived from common applications or anticipated intervention uses, as well as from current clinical practice guidelines and results of studies examining interventions efficacy and safety. Scenarios were rated on a scale of 1 (harm outweighs benefit) to 9 (benefit outweighs harm), to define appropriate use (median: 7 to 9), uncertain use (median: 4 to 6), and inappropriate use (median: 1 to 3) of endotracheal suction interventions. Scenarios were than classified as a level of appropriateness. CONCLUSIONS: The RAND Corporation/University of California, Los Angeles Appropriateness Method provides a thorough and transparent method to inform development of the first appropriate use criteria for endotracheal suction interventions in paediatric patients.
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Enfermagem de Cuidados Críticos , Respiração Artificial , Recém-Nascido , Criança , Humanos , Sucção/métodosRESUMO
BACKGROUND/OBJECTIVE: Endotracheal suction is an invasive and potentially harmful technique used for airway clearance in mechanically ventilated children. Choice of suction intervention remains a complex and variable process. We sought to develop appropriate use criteria for endotracheal suction interventions used in paediatric populations. METHODS: The RAND Corporation and University of California, Los Angeles Appropriateness Method was used to develop the Paediatric AirWay Suction appropriateness guide. This included defining key terms, synthesising current evidence, engaging an expert multidisciplinary panel, case scenario development, and two rounds of appropriateness ratings (weighing harm with benefit). Indications (clinical scenarios) were developed from common applications or anticipated use, current practice guidelines, clinical trial results, and expert consultation. RESULTS: Overall, 148 (19%) scenarios were rated as appropriate (benefit outweighs harm), 542 (67%) as uncertain, and 94 (11%) as inappropriate (harm outweighs benefit). Disagreement occurred in 24 (3%) clinical scenarios, namely presuction and postsuction bagging across populations and age groups. In general, the use of closed suction was rated as appropriate, particularly in the subspecialty population 'patients with highly infectious respiratory disease'. Routine application of 0.9% saline for nonrespiratory indications was more likely to be inappropriate/uncertain than appropriate. Panellists preferred clinically indicated suction versus routine suction in most circumstances. CONCLUSION: Appropriate use criteria for endotracheal suction in the paediatric intensive care have the potential to impact clinical decision-making, reduce practice variability, and improve patient outcomes. Furthermore, recognition of uncertain clinical scenarios facilitates identification of areas that would benefit from future research.
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Sucção , Criança , HumanosRESUMO
Climate change and resource exploitation have been shown to modify the importance of bottom-up and top-down forces in ecosystems. However, the resulting pattern of trophic control in complex food webs is an emergent property of the system and thus unintuitive. We develop a statistical nondeterministic model, capable of modeling complex patterns of trophic control for the heavily impacted North Sea ecosystem. The model is driven solely by fishing mortality and climatic variables and based on time-series data covering >40 y for six plankton and eight fish groups along with one bird group (>20 y). Simulations show the outstanding importance of top-down exploitation pressure for the dynamics of fish populations. Whereas fishing effects on predators indirectly altered plankton abundance, bottom-up climatic processes dominate plankton dynamics. Importantly, we show planktivorous fish to have a central role in the North Sea food web initiating complex cascading effects across and between trophic levels. Our linked model integrates bottom-up and top-down effects and is able to simulate complex long-term changes in ecosystem components under a combination of stressor scenarios. Our results suggest that in marine ecosystems, pathways for bottom-up and top-down forces are not necessarily mutually exclusive and together can lead to the emergence of complex patterns of control.
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Mudança Climática , Ecossistema , Cadeia Alimentar , Plâncton , Água do Mar , Animais , Biomassa , Aves/fisiologia , Peixes/fisiologia , Modelos Estatísticos , Mar do Norte , Dinâmica Populacional/estatística & dados numéricos , Comportamento PredatórioRESUMO
Brown, GA, Veith, S, Sampson, JA, Whalan, M, and Fullagar, HHK. Influence of training schedules on objective measures of sleep in adolescent academy football players. J Strength Cond Res 34(9): 2515-2521, 2020-Football academy settings may pose risks to adolescent athletes achieving sufficient sleep because of the contextual challenges these players face (e.g., psychosocial pressure, changes in training, competition, and academic stress). Given the importance of sleep to overall health as well as physical athletic development and injury risk, this study aimed to investigate whether differences in training schedules (morning vs. evening training sessions) affected objective measures of sleep in adolescent academy football (soccer) players. Twelve academy players (mean age 14.18 ± 1.36 years) wore an ActiGraph accelerometer on nights before, and nights of, training days in 2 separate weeks where morning (09:00-11:00 hours) and evening (18:00-20:00 hours) training occurred. Objective sleep parameters and training load data were collected. Night-time sleep periods were categorized as sleep preceding morning training, preceding evening training, or after evening training. One-way univariate and multivariate analyses of variance for repeated measures were performed to determine the impact of the training schedule on sleep. Significance levels were set at p < 0.05. The total sleep time was below the recommended guidelines (<8 hours) across conditions. A large significant effect of the training schedule on time attempted to fall asleep (p = 0.004, effect size [ES] = 0.40) and time of sleep (p = 0.003, ES = 0.41) was present, with post-evening sessions resulting in the latest times. Overall, the players' sleep behavior was resilient to changes in training schedules. However, the low sleep durations (and potential risks to physical performance/injury) suggest that sleep education coupled with practical interventions are required in this cohort.
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Exercício Físico , Sono , Adolescente , Humanos , Masculino , Acelerometria , Atletas , Estudos de Coortes , Exercício Físico/fisiologia , Sono/fisiologiaRESUMO
PURPOSE OF REVIEW: Pulmonary vascular disease (PVD) complicates the course of many cardiovascular, pulmonary and other systemic diseases in children. The physiological sequelae (pulmonary hypertension and elevated pulmonary vascular resistance) can overwhelm the right ventricle and lead to circulatory collapse. Despite the common end-point, the preceding pathophysiology is complex and variable and requires a tailored approach to diagnosis and management. In this article, we will review the most recent evidence and explore an approach to current controversies in the diagnosis and management of common or challenging patient subgroups. RECENT FINDINGS: New methods of interpreting data derived from echocardiography and cardiac magnetic resonance imaging may assist in risk stratification and response to therapy. In specific patient subgroups, standard pharmacological therapies to reduce right ventricle afterload may be overutilized, ineffective and in some cases harmful. In the patient failing pharmacological therapy, new and novel techniques are being explored including temporary extracorporeal mechanical circulatory support, pumpless lung assist devices and novel surgical and catheterization procedures. SUMMARY: PVD is a diverse entity, and attention to the underlying pathophysiology is essential for appropriate management. Despite significant advances in our understanding, the majority of data comes from small uncontrolled studies and must be interpreted with caution.
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Cuidados Críticos/métodos , Pneumopatias , Doenças Vasculares , Criança , Humanos , Unidades de Terapia Intensiva , Pneumopatias/diagnóstico , Pneumopatias/etiologia , Pneumopatias/fisiopatologia , Pneumopatias/terapia , Doenças Vasculares/diagnóstico , Doenças Vasculares/etiologia , Doenças Vasculares/fisiopatologia , Doenças Vasculares/terapiaRESUMO
PURPOSE: To describe the self-reported menstrual health, symptomatology, and perceived effects of the menstrual cycle on athletic performance for national and international Australian football (soccer) players. METHODS: Players from national and domestic teams were invited to complete an online questionnaire regarding menstrual health, use of hormonal contraceptives (HCs), negative symptomatology, and perceived disruption of the menstrual cycle to performance. Descriptive statistics and binomial regressions with odds ratios (OR) were used to report the relationship of menstrual-related variables with perceived performance disruption. RESULTS: A total of 199 players (20.9 [5.1] y) completed the questionnaire, with 18% of players reporting using HCs. One primary amenorrhea case was detected, and 26% of players reported menarche at age ≥15 years. For non-HC users, the prevalence of secondary amenorrhea was 2%, oligomenorrhea was 19%, and heavy menstrual bleeding was 11%. Ninety-seven percent of players reported experiencing physical or affective menstrual symptoms (5 [1.3] per player), and 40% of all players reported that menstrual symptoms impacted their ability to work, study, train, or compete. Furthermore, 40% of players perceived their training or performance to be disrupted by the menstrual cycle. Increasing number of menstrual symptoms (OR = 1.43; 95% CI, 1.28-1.62; P < .001), heavy menstrual bleeding (OR = 12.73; 95% CI, 3.4-82.8; P < .001), and pelvic pain (OR = 3.40; 95% CI, 1.7-7.2; P < .001) increased the likelihood of perceiving the menstrual cycle to disrupt performance. CONCLUSION: Heavy menstrual bleeding and HC use were low among this cohort of national and international footballers, whereas amenorrhea and oligomenorrhoea were comparable with other football populations. Nearly all players reported menstrual symptoms, and increased symptomatology was associated with greater perceived effects on performance.
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This article offers the case of cystic fibrosis (CF), a multi-system disease, to illustrate how individuals with chronic illness cultivate and apply embodied knowledge to optimize their well-being. We identified three interrelated processes that occur when disease chronicity and menstrual cyclicity meet: 1) knowledge production with a period-tracking app; 2) application of embodied knowledge to manage life with menstrual-related CF symptoms; 3) cultivation of the body-self as a menstruating woman with CF. These dynamic processes capture how cis-gender women with CF attune to their bodies, navigate their illness, and situate themselves within their lifeworlds. Genetic conditions like CF are apt for studying these processes because adults have managed their disease for decades, with longitudinal experience that often exceeds that of their clinicians. Our evidence elucidates the co-constitutive nature of chronic disease, gendered subjectivity, and biological processes in flux. We explored the menstrual cyclicity of chronic disease symptoms by having 72 participants track their CF symptoms across 4 menstrual cycles on a customized period-tracking app. We performed semi-structured interviews with 20 participants to understand how they interpreted these cyclical CF symptoms. We learned that digital tracking attuned participants to monthly fluctuations in CF symptoms. They applied this knowledge to manage their lives and shape their sense of self. We argue that women with CF produce distinct embodied knowledge during their reproductive years, shaping their illness experience, disease management, overall health, quality of life, and selfhood. The dynamics we describe may reflect broader patterns by which women with other chronic illnesses experience their bodies and understand themselves in the world.
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BACKGROUND: One-third of people with cystic fibrosis (pwCF) are food insecure, with profound negative implications for their health. This qualitative study explored lived experiences with food insecurity among pwCF or their caregivers and summarized their perspectives on food insecurity screening in the cystic fibrosis (CF) programs where they receive care. METHODS: Semi-structured qualitative interviews were conducted with two groups: (1) adults with CF and (2) parents or caregivers of children with CF. PwCF or their caregivers with previously documented food insecurity were referred for participation by pediatric and adult CF programs across the United States. Interviews were recorded and transcribed, and data were coded and analyzed by two independent coders using a content-analysis approach with a constant comparative method to generate themes. RESULTS: A total of 26 participants from 22 CF programs were interviewed. The sample included 17 adults with CF and nine parents of children with CF. Participants were predominantly White (88%) and female (92%). Five overarching themes emerged: (1) food insecurity among CF patients and their families is onerous, (2) financial constraints imposed by the CF disease contribute to food insecurity, (3) federal and state programs provide limited food assistance, and other support is minimal, (4) shame and stigma engulf conversations around food insecurity with CF care teams, and (5) food insecurity screening in clinical settings is critical. CONCLUSIONS: Food insecurity among pwCF is invisible, but its consequences are dire. Assistance is limited, screening is inconsistent, and stigma is widespread. There is an urgent need to normalize food insecurity screening, standardize the screening process, and expand food assistance programs for pwCF.
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This systematic review summarizes the major developments in extracorporeal membrane oxygenation (ECMO) circuitry in pediatrics over the past 20 years and demonstrates the impacts of those developments on clinical outcomes. This systematic review followed structured Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A total of 1987 studies were retrieved, of which 82 were included in the final analysis. Over the past 20 years, ECMO pumps have shifted from roller pumps to centrifugal pumps. Silicone and polypropylene hollow fiber membrane oxygenators were initially used but have been replaced by polymethylpentene hollow fiber membrane oxygenators, with other ECMO components poorly reported. Considerable variability in mortality was found across studies and there was no statistical difference in mortality rates across different periods. The duration of ECMO and other outcome measures were inconsistently reported across studies. This systematic review demonstrated technological developments in pumps and oxygenators over the last two decades, although patient mortality rates remained unchanged. This could be because of ECMO support applied to patients in more critical conditions over the years. We also highlighted the limitations of methodology information disclosure and outcome measures in current ECMO studies, showing the need of reporting standardization for future ECMO studies.
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Oxigenação por Membrana Extracorpórea , Humanos , Criança , Oxigenação por Membrana Extracorpórea/métodos , OxigenadoresRESUMO
Midwives have a pivotal role in screening for risk factors for mental illness and psychosocial vulnerabilities in women during the perinatal period. They also have a key responsibility to provide women with the appropriate resources to support their mental wellbeing. Midwives can lack confidence and/or feelings of competence regarding these skills. Care of women in the context of their perinatal mental health is a core midwifery skill that deserves practical learning during pre-registration education, just as the more 'hands on' skills such as abdominal palpation, labour and birth support or newborn examination. However, there is limited opportunity for students to gain clinical placement experiences that are specific to perinatal mental health (PMH). This discussion paper describes an innovative teaching and learning project that aimed to improve confidence in students' ability to conduct screening, support, and referral of women experiencing mental ill health. The project involved the development of an Objective Structured Clinical Examination (OSCE) and audio visual resources to support learning and teaching and clinical placement. Feedback was collected to inform the refinement of the first OSCE, and to assist in the design of the audio visual resources that are now displayed publicly on the Australian College of Midwives website at https://www.midwives.org.au/Web/Web/Professional-Development/Resources.aspx?hkey=12c2360e-d8b9-4286-8d0a-50aeaeca9702.
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Transtornos Mentais , Serviços de Saúde Mental , Tocologia , Gravidez , Recém-Nascido , Humanos , Feminino , Tocologia/educação , Austrália , Transtornos Mentais/diagnóstico , EstudantesRESUMO
BACKGROUND: As the nutritional status of people with CF (PwCF) is associated with their socioeconomic status, it is important to understand factors related to food security and food access that play a role in the nutritional outcomes of this population. We assessed the contributions of CF program-level food insecurity screening practices and area-level food access for nutritional outcomes among PwCF. METHODS: We conducted a cross-sectional analysis of 2019 data from the U.S. CF Patient Registry (CFFPR), linked to survey data on CF program-level food insecurity screening and 2019 patient zip code-level food access. Pediatric and adult populations were analyzed separately. Nutritional outcomes were assessed with annualized BMI percentiles (CDC charts) for children and BMI (kg/m2) for adults, with underweight status defined as BMIp <10% for children and BMI <18.5 kg/m2 for adults, and overweight or obese status defined as BMIp >85% for children and BMI >25 kg/m2 for adults. Analyses were adjusted for patient sociodemographic and clinical characteristics. RESULTS: The study population included 11,971 pediatric and 14,817 adult PwCF. A total of 137 CF programs responded to the survey, representing 71% of the pediatric sample and 45% of the CFFPR adult sample. The joint models of nutritional status as a function of both program-level food insecurity screening and area-level food access produced the following findings. Among children with CF, screening at every visit vs less frequently was associated with 39% lower odds of being underweight (OR 0.61, p = 0.019), and the effect remained the same and statistically significant after adjusting for all covariates (aOR 0.61, p = 0.047). Residence in a food desert was associated both with higher odds of being underweight (OR 1.66, p = 0.036; aOR 1.58, p = 0.008) and with lower BMIp (-4.81%, p = 0.004; adjusted -3.73%, p = 0.014). Among adults with CF, screening in writing vs verbally was associated with higher odds of being overweight (OR 1.22, p = 0.028; aOR 1.36, p = 0.002) and higher BMI (adjusted 0.43 kg/m2, p = 0.032). Residence in a food desert was associated with higher odds of being underweight (OR 1.48, p = 0.025). CONCLUSIONS: Food insecurity screening and local food access are independent predictors of nutritional status among PwCF. More frequent screening is associated with less underweight among children with CF, whereas screening in writing (vs verbally) is associated with higher BMI among adults. Limited food access is associated with higher odds of being underweight in both children and adults with CF, and additionally with lower BMI among children with CF. Study results highlight the need for standardized, evidence-based food insecurity screening across CF care programs and for equitable food access to optimize the nutritional outcomes of PwCF.