Background: When commencing enteral feeding, patients and families will want to know the likelihood of returning to an oral diet. There is a paucity of data on the prognosis of patients with gastrostomies. We describe a large dataset of patients, which identifies factors influencing gastrostomy removal and assesses the likelihood of the patient having at home enteral nutrition.
View Article and Find Full Text PDFAmyotroph Lateral Scler Frontotemporal Degener
May 2024
Objective: Understand the practice and beliefs of healthcare professionals (HCPs) supporting the decision-making of people with MND (pwMND) about gastrostomy placement, including identifying differences between professions.
Methods: An online cross-sectional survey disseminated to HCPs who support the decision-making of pwMND about gastrostomy placement.
Results: A total of 139 participants completed the survey including representation from a range of healthcare professions.
is an autism spectrum disorder (ASD) risk gene and encodes a voltage-gated sodium channel. However, the impact of ASD-associated SCN2A variants on human neuron development is unknown. We studied SCN2A using isogenic induced pluripotent stem cells (iPSCs), and patient-derived iPSCs harboring a R607* truncating variant.
View Article and Find Full Text PDFBackground: Enteral tube feeding can require considerable amounts of plastic equipment including delivery sets and containers, often disposed of after a single feeding session because of bacterial contamination concerns. The aim of this research was to assess whether reuse of delivery sets and containers for up to 24 h is safe from a microbiological perspective.
Methods: Four enteral tube feeding systems (FS) were tested under hygienic controlled or repeated inoculation challenge conditions using key foodborne pathogens, to assess bacterial growth over time (FS1: ready-to-hang, closed 1-L system with delivery set reused, stored at room temperature [RT]; FS2: a prepared, powdered, open 1-L system with delivery set and container reused, stored at RT; FS3 and FS4: prepared, powdered, open 200-ml bolus systems with delivery set and container reused, stored at RT [FS3] and refrigeration [FS4]).
Background: People with motor neuron disease (pwMND) are routinely offered gastrostomy feeding tube placement and (non-invasive and invasive) ventilation to manage the functional decline associated with the disease. This study aimed to synthesise the findings from the qualitative literature to understand how individual, clinical team and organisational factors influence pwMND decisions about these interventions.
Methods: The study design was guided by the enhancing transparency in reporting the synthesis of qualitative research (ENTREC) statement.
We aimed to compare tic- and non-tic-related impairment experienced by adolescent girls and boys (ages 13 through 17) with Tourette syndrome and associations with age. We extracted from the electronic health record child and parental responses to the mini-Child Tourette Syndrome Impairment Scale (mini-CTIM) and other questionnaire data reflective of tic- and non-tic-related impairment of adolescents with Tourette syndrome presenting to our clinic over a 12-month period. We identified a total of 132 (49 female, 83 male) unique adolescent encounters.
View Article and Find Full Text PDFFrontline Gastroenterol
October 2022
Background: Significant morbidity and mortality can be associated with gastrostomy insertion, likely influenced by patient selection, indication and aftercare. We aimed to establish what current variation in practice exists and how this has improved by comparison to our previously published British Society of Gastroenterology survey of 2010.
Methods: We approached all National Health Service (NHS) hospitals in England (n=198).
Background & Aims: Poor nutritional outcomes are observed in people with Amyotrophic Lateral Sclerosis (pwALS) including weight loss and poor dietary intake. Surveys of healthcare professionals have highlighted the lack of evidence and knowledge regarding nutritional management of ALS throughout the disease course. Furthermore, national evidence-based guidance is lacking.
View Article and Find Full Text PDFDigital health applications can improve quality and effectiveness of healthcare, by offering a number of new tools to users, which are often considered a medical device. Assuring their safe operation requires, amongst others, clinical validation, needing large datasets to test them in realistic clinical scenarios. Access to datasets is challenging, due to patient privacy concerns.
View Article and Find Full Text PDFObjectives: Research suggests that higher Body Mass Index is associated with improved survival in people with Amyotrophic Lateral Sclerosis (pwALS). Yet, understanding of the barriers and enablers to increasing calorie intake is limited. This study sought to explore these issues from the perspective of pwALS, informal carers, and healthcare professionals.
View Article and Find Full Text PDFLactate levels are commonly used as an indirect measure to assess metabolic stress in clinical conditions like sepsis. Dynamic lactate measurements are recommended to assess and guide treatment in patients with shock and other critical care conditions. A minimally invasive, continuous lactate monitor has potential to improve clinical decisions and patient care.
View Article and Find Full Text PDFBackground: People living with amyotrophic lateral sclerosis (ALS) face many challenges with respect to taking adequate nutrition. Growing evidence links weight loss with negative prognostic outcomes. We aimed to explore the practice of dietitians in the UK with regard to the nutritional management of ALS.
View Article and Find Full Text PDFAmyotroph Lateral Scler Frontotemporal Degener
August 2021
The aim of this study was to investigate how nutritional management services for people with Amyotrophic Lateral Sclerosis (pwALS) are structured in the UK, in order to gain insight into current practice and identify key barriers and enablers to delivering and providing services. : A three-part, sequential mixed-methods study was conducted that comprised (i) a thematic analysis of data from five focus groups (with 47 ALS health professionals from 41 UK organizations and four service user representatives), (ii) a nationwide cross-sectional survey (281 ALS healthcare professionals) and (iii) a freedom of information request (251 organizations). : UK nutritional management services for pwALS are coordinated from specialist ( = 22) and non-specialist care centers ( = 89), with national variability in the organization and delivery of services.
View Article and Find Full Text PDFPurpose: To evaluate the feasibility of a new optical device that measures peripheral blood flow as a diagnostic and monitoring tool for patients with peripheral artery disease (PAD).
Materials And Methods: In this prospective study, 167 limbs of 90 patients (mean age, 76 y; 53% men) with suspected PAD were evaluated with the FlowMet device, which uses a new type of dynamic light-scattering technology to assess blood flow in real time. Measurements of magnitude and phasicity of blood flow were combined into a single-value flow-waveform score and compared vs ankle-brachial index (ABI), toe-brachial index (TBI), and clinical presentation of patients per Rutherford category (RC).
Biomed Opt Express
September 2020
Recent advances in optical technology have emerged for measuring blood flow in the extremities using speckleplethysmography (SPG), which may address needs in vascular medicine and other fields. SPG has demonstrated a highly linear response with flow rate, but the susceptibility to differences in skin tone is unclear. Two validation studies using skin-simulating phantoms and a simple clinical protocol were conducted to determine the impact of absorbing skin layers on SPG measurements.
View Article and Find Full Text PDFStud Health Technol Inform
June 2020
Background: Increasing numbers of intelligent healthcare applications are developed by analysing big data, on which they are trained. It is necessary to assure that such applications will be safe for patients; this entails validation against datasets. But datasets cannot be shared easily, due to privacy, and consent issues, resulting in delaying innovation.
View Article and Find Full Text PDFInt J Pediatr Otorhinolaryngol
July 2020
Objectives: To assess the validity of a bench-top model of an optical tympanometry device to diagnose in vitro model of middle ear effusion (MEE).
Methods And Materials: We illuminated an in vitro model of ear canal and tympanic membrane with broadband light and relayed remitted light to a spectrometer system. We then used our proprietary algorithm to extract spectral features that, together with our logistic regression classifiers, led us to calculate a set of simplified indices related to different middle ear states.
Systems contradictions present challenges that need to be effectively managed, e.g. due to conflicting rules and advice, goal conflicts, and mismatches between demand and capacity.
View Article and Find Full Text PDFBackground: Around a third of people with multiple sclerosis (MS) experience dysphagia. There is a need for disease-specific information on survival following placement of gastrostomy tube in people with MS.
Objective: We aimed to study survival following gastrostomy in patients with MS.
Introduction: Motor neuron disease (MND) is a progressive, incurable disease, characterised by degeneration of the nerves in the brain and spinal cord. Due to the multisystem effects of the disease, patients are faced with many complex, time-sensitive decisions, one of which is the decision on gastrostomy feeding. There are currently no published decision aids (DAs) to support patients making this decision in the UK.
View Article and Find Full Text PDFBackground & Aims: Weight loss is common in people with neurodegenerative diseases of the motor system (NDMS), such as Parkinson's disease and Amyotrophic Lateral Sclerosis, and is associated with reduced quality of life, functional ability and survival. This systematic review aims to identify interventions and intervention components (i.e.
View Article and Find Full Text PDFBMJ Health Care Inform
November 2019
Introduction: Stereotactic ablative radiotherapy (SABR) for lung cancer is a modality of treatment that has improved outcomes for lung cancer patients. However, radiotherapy for lung cancer is underutilized and fewer than half of elderly patients with non-small cell lung cancer (NSCLC) receive active treatment. The purpose of this study is to report on a collaboration in implementing an NSCLC SABR (stereotactic ablative body radiation) program safely, efficiently, and uniformly across several centers, including regional sites.
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