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INTRODUCTION/AIMS: People with Charcot-Marie-Tooth Disease (CMT) frequently report problems with balance, which lead to an increased risk of falls. Evidence is emerging of training interventions to improve balance for people with CMT, but to date all have relied on clinic-based treatment and equipment. This proof-of-concept study explored whether a multi-modal program of proprioceptive rehabilitation and strength training can be delivered at home, to improve balance performance in people with CMT Type 1A. METHODS: Fourteen participants with CMT Type 1A were recruited into this randomized, two-arm study. Baseline assessments included measures of disease severity, posturography, physical function, and patient-reported outcome measurements. All participants received one falls education session. Participants were randomized to either 12 weeks of balance training or 12 weeks of usual activities. The intervention comprised a home-based, multi-sensory balance training and proximal strengthening program, supported by three home visits from a physiotherapist. RESULTS: Thirteen participants completed the study. The intervention was successfully implemented and well tolerated, with high participation levels. Functional measures of balance and walking showed strong effect sizes in favor of the training group. Posturography testing demonstrated moderate improvements in postural stability favoring the intervention group. Inconsistent changes were seen in lower limb strength measures. DISCUSSION: The intervention was feasible to implement and safe, with some evidence of improvement in balance performance. This supports future studies to expand this intervention to larger trials of pragmatic, home-delivered programs through current community rehabilitation services and supported self-management pathways.
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Enfermedad de Charcot-Marie-Tooth , Entrenamiento de Fuerza , Humanos , Enfermedad de Charcot-Marie-Tooth/terapia , Terapia por Ejercicio , Prueba de Estudio Conceptual , Modalidades de Fisioterapia , Equilibrio PosturalRESUMEN
BACKGROUND: Self-management support (SMS) forms a central pillar in the management of long-term conditions. It is firmly aligned with UK health policy but there is a paucity of evidence exploring how it is enacted in the context of neuromuscular diseases (NMDs). Bridges is a SMS programme originally developed in stroke. A new version of the programme (Neuromuscular Bridges) has recently been co-designed with people with lived experience of NMD and requires evaluation. The implementation of SMS is inherently complex with potential barriers at the level of the patient, provider, and wider organisation. The success of implementing programmes can be highly dependent on context, indicating a rationale for considering implementation determinants at an early stage. This study aims to explore the feasibility of (1) delivering, (2) evaluating, and (3) implementing Neuromuscular Bridges at a specialist neuromuscular centre. METHODS: This study employs a hybrid II design underpinned by Normalisation Process Theory (NPT), which has been used prospectively to inform the implementation plan and will also inform the analysis. The feasibility of delivering, evaluating, and implementing Neuromuscular Bridges will be assessed using a single-arm pre-post design. In terms of delivery and evaluation, we will explore acceptability, demand within the service, performance of outcome measures, recruitment, and retention. Implementation strategies have been selected from a refined taxonomy of strategies, mapped to NPT, and targeted at known barriers and facilitators at the specialist centre that were identified from preliminary stakeholder engagement activities. The impact of the strategy bundle on fidelity, acceptability, appropriateness, and adoption will be evaluated using qualitative interviews, administrative data, surveys, and a notes audit. CONCLUSIONS: This this study will provide valuable feasibility data on a co-designed SMS programme for people with NMDs that will be used to inform a larger implementation study, requirements for embedding it in a specialist centre, and rollout to other specialist centres. Using hybrid methodology at the feasibility stage is unusual and this study will provide important insights into the usefulness of taking this approach at this point in the research pipeline. TRIAL REGISTRATION: ISRCTN Trial ID: ISRCTN14208138 . Date registered: 18/08/2021.
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INTRODUCTION: People experiencing homelessness (PEH) have poorer health than housed people but face barriers accessing care and being involved in research. As an often-ignored group, their contribution to help shape research that is for and about them is essential, as it can strengthen the research proposal, in turn facilitating research and outcomes that are relevant to this vulnerable group. METHODS: Six people with experience of homelessness attended a PPI consultation aided by Pathway, a UK homeless peer advocacy charity, which coordinates an 'Experts by Experience' group. We present reflections on conducting PPI with PEH that informed the development of a physiotherapy research proposal. Kolb's Experiential Learning Cycle guided reflections across four stages: (1) describing the PPI experience; (2) reviewing and reflecting on the PPI experience; (3) learning from the PPI experience; and (4) planning and trying out learning. RESULTS: Reflections highlighted the importance of: working closely with an advocacy organisation and leader to reach under-served people; the diversity of experiences; using familiar venues, contingency and budget planning; flexibility and 'allowing time; talking less; listening more'; planning for early and ongoing PPI, and the potential of mobile 'one-off' PPI outreach models to reach vulnerable groups. CONCLUSION: Kolb's Experiential Learning Cycle aided team reflection on feedback from PEH, which helped refine and strengthen a physiotherapy research proposal. The project was unfunded. However, a reflective model helped maximize learning and impact including for future PPI and research. The novel application of Kolb's Experiential Learning Cycle provided structure, facilitated reflection and enhanced individual and collective learning and may benefit capturing learning from PPI with other vulnerable populations. PATIENT OR PUBLIC CONTRIBUTION: We highlight how a PPI consultation with people with experience of homelessness helped shape a funding proposal. Additionally, the reflections of the experts by experience team leader are included.
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Personas con Mala Vivienda , Poblaciones Vulnerables , Humanos , Aprendizaje Basado en Problemas , Vivienda , Modalidades de FisioterapiaRESUMEN
The outbreaks of Cronobacter sakazakii, Salmonella spp, and Bacillus cereus in powdered foods have been increasing in worldwide. However, an effective method to pasteurize powdered foods before consumption remains lacking. A prototype Intense Pulsed Light (IPL) system was developed to disinfect powdered foods under different IPL and environmental conditions. Synergistic effect of IPL and TiO2 photocatalysis on microbial inactivation was studied. The results show that high energy intensity of each pulse, high peak intensity, and short pulsed duration contributed to a high microbe inactivation. With TiO2 photocatalysis, one additional log10 reduction was achieved, bringing the total log reduction to 4.71 ± 0.07 (C. sakazakii), 3.49 ± 0.01 (E. faecium), and 2.52 ± 0.10 (B. cereus) in non-fat dry milk, and 5.42 ± 0.10 (C. sakazakii), 4.95 ± 0.24 (E. faecium), 2.80 ± 0.23 (B. cereus) in wheat flour. IPL treatment combined with the TiO2 photocatalysis exhibits a strong potential to reduce the energy consumption in improving the safety of powdered foods.
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Cronobacter sakazakii/efectos de la radiación , Cronobacter/efectos de la radiación , Harina/microbiología , Conservación de Alimentos/métodos , Viabilidad Microbiana/efectos de la radiación , Leche/microbiología , Triticum/microbiología , Animales , Bacillus cereus/crecimiento & desarrollo , Bacillus cereus/efectos de la radiación , Cronobacter/crecimiento & desarrollo , Microbiología de Alimentos , Conservación de Alimentos/instrumentación , Luz , Polvos/química , Salmonella/crecimiento & desarrollo , Salmonella/efectos de la radiaciónRESUMEN
OBJECTIVE: Limb girdle muscular dystrophy type R9 (LGMD R9) is an autosomal recessive muscle disease for which there is currently no causative treatment. The development of putative therapies requires sensitive outcome measures for clinical trials in this slowly progressing condition. This study extends functional assessments and MRI muscle fat fraction measurements in an LGMD R9 cohort across 6 years. METHODS: Twenty-three participants with LGMD R9, previously assessed over a 1-year period, were re-enrolled at 6 years. Standardized functional assessments were performed including: myometry, timed tests, and spirometry testing. Quantitative MRI was used to measure fat fraction in lower limb skeletal muscle groups. RESULTS: At 6 years, all 14 muscle groups assessed demonstrated significant increases in fat fraction, compared to eight groups in the 1-year follow-up study. In direct contrast to the 1-year follow-up, the 6-min walk test, 10-m walk or run, timed up and go, stair ascend, stair descend and chair rise demonstrated significant decline. Among the functional tests, only FVC significantly declined over both the 1- and 6-year studies. INTERPRETATION: These results further support fat fraction measurements as a primary outcome measure alongside functional assessments. The most appropriate individual muscles are the vastus lateralis, gracilis, sartorius, and gastrocnemii. Using composite groups of lower leg muscles, thigh muscles, or triceps surae, yielded high standardized response means (SRMs). Over 6 years, quantitative fat fraction assessment demonstrated higher SRM values than seen in functional tests suggesting greater responsiveness to disease progression.
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Músculo Esquelético/fisiopatología , Distrofia Muscular de Cinturas/fisiopatología , Adulto , Estudios de Cohortes , Progresión de la Enfermedad , Femenino , Humanos , Imagen por Resonancia Magnética , Masculino , Persona de Mediana Edad , Evaluación de Resultado en la Atención de SaludRESUMEN
Salmonella and Cronobacter are two bacteria of concern in powdered food ingredients with low water activity, due to their ability to remain viable for long periods of time. There is great interest in studying the survival of these bacteria in powdered foods, but discrepancies have been reported between broth-grown and lawn-grown bacterial cells and their thermal resistance and desiccation tolerance once inoculated onto powdered foods. The purpose of this study was to evaluate three different powdered food inoculation methods, two broth-grown and one lawn-grown. To evaluate these methods on three types of powdered food matrices, Salmonella enterica serovar Typhimurium LT2 (ATCC 700720), Salmonella surrogate Enterococcus faecium (NRRL B-2354), and Cronobacter sakazakii (ATCC 29544) were inoculated onto nonfat dry milk powder, organic soy flour, and all-purpose flour using one of the three previously developed inoculation methods. In the first broth-grown method, labeled broth-grown pelletized inoculation, a bacterial cell pellet was added to powdered foods directly and mixed with a sterile wooden stick. The second broth-grown method, labeled broth-grown spray inoculation, used a chromatography reagent sprayer to spray the bacterial cell suspension onto the powdered foods. The third inoculation method, lawn-grown liquid inoculation, made use of a spot inoculation and a stomacher to incorporate each bacterium into the powdered foods. Results indicated that the method of inoculation of each powder impacted repeatability and bacteria survivability postequilibration (4 to 6 days). Broth-grown spray inoculation, regardless of the powder and bacterium, resulted in the highest log reduction, with an average â¼1-log CFU/g reduction following equilibration. Broth-grown pelletized inoculation resulted in the second-highest log reduction (â¼0.79 log CFU/g), and finally, lawn-grown liquid inoculation was the most stable inoculation method of the three, with â¼0.52-log CFU/g reduction. Overall, the results from this inoculation study demonstrate that inoculation methodologies impact the desiccation tolerance and homogeneity of C. sakazakii, E. faecium, and Salmonella Typhimurium LT2.
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The current paper presents a theoretical framework for standardizing Peace Data as a means of understanding the conditions under which people's technology use results in positive engagement and peace. Thus, the main point of our paper is that Big Data can be conceptualized in terms of its value to peace. We define peace as a set of positive, prosocial behaviors that maximize mutually beneficial positive outcomes resulting from interactions with others. To accomplish this goal, we present hypothetical and real-world, data driven examples that illustrate our thinking in this domain and present guidelines for how to identify, collect, utilize, and evaluate Peace Data generated during mediated interactions and further suggest that Peace Data has four primary components: group identity information, behavior data, longitudinal data, and metadata. This paper concludes with a call for participation in a Peace Data association and suggested for guidelines for how scholars and practitioners can identify Peace Data in their own domains. Ethical considerations and suggestions for future research are also discussed.
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BACKGROUND: Positive resection margins are amongst the strongest predictors of cancer-related mortality for adenocarcinoma of the stomach and esophagus. Although intraoperative pathology consultation with frozen section of margins can predict final permanent section pathology, the accuracy of this approach is not known. We sought to determine the diagnostic accuracy of frozen section margin analysis in esophagogastric adenocarcinoma and the impact that it had on surgical therapy. METHODS: Patients with resection of esophagogastric adenocarcinoma at a single centre from 1998 to 2008 were identified. Clinicopathologic data were collected. Frozen section results were compared to permanent section assessment, and sensitivity, specificity, positive, and negative predictive values were calculated. Patients with positive margins by frozen section were reviewed to assess the impact on surgical decision-making. RESULTS: Of 220 patients who underwent surgery for adenocarcinoma of the esophagus and stomach (esophagus: 34/220, EGJ: 106/220, stomach 80/220), 56 % had an intraoperative consultation. Of these 122 patients, 66 % underwent frozen section. All errors on frozen section occurred on the interpretation of the proximal margin. The diagnostic accuracy of frozen section at the proximal margin was 93 % with sensitivity = 67 %, specificity = 100 %, positive predictive value = 100 %, and negative predictive value = 91 %. Signet ring cells were present in 83 % of false-negative readings. Surgical management was altered in 10 of the 13 of patients who had a true positive frozen section and 9 of these patients were converted to R0 resections. CONCLUSIONS: Although very specific, negative results on frozen section require greater caution when signet ring cells are present. For esophagogastric adenocarcinoma, frozen section alters management and may increase the rate of complete resection.