An agenda for e-health in Nursing, ACENDIO E-health conference
In this cross-sectional study, we assessed the feasibility of completing the Patient-Generated Subjective Global Assessment (PG-SGA) in long-stay nursing home residents.
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Objective: To obtain insight into (a) the prevalence of nursing staff–experienced barriers regarding the promotion of functional activity among nursing home residents, and (b) the association between these barriers and nursing staff–perceived promotion of functional activity. Method: Barriers experienced by 368 nurses from 41 nursing homes in the Netherlands were measured with the MAastrIcht Nurses Activity INventory (MAINtAIN)-barriers; perceived promotion of functional activities was measured with the MAINtAIN-behaviors. Descriptive statistics and hierarchical linear regression analyses were performed. Results: Most often experienced barriers were staffing levels, capabilities of residents, and availability of resources. Barriers that were most strongly associated with the promotion of functional activity were communication within the team, (a lack of) referral to responsibilities, and care routines. Discussion: Barriers that are most often experienced among nursing staff are not necessarily the barriers that are most strongly associated with nursing staff–perceived promotion of functional activity.
Huntington’s disease (HD) and various spinocerebellar ataxias (SCA) are autosomal dominantly inherited neurodegenerative disorders caused by a CAG repeat expansion in the disease-related gene1. The impact of HD and SCA on families and individuals is enormous and far reaching, as patients typically display first symptoms during midlife. HD is characterized by unwanted choreatic movements, behavioral and psychiatric disturbances and dementia. SCAs are mainly characterized by ataxia but also other symptoms including cognitive deficits, similarly affecting quality of life and leading to disability. These problems worsen as the disease progresses and affected individuals are no longer able to work, drive, or care for themselves. It places an enormous burden on their family and caregivers, and patients will require intensive nursing home care when disease progresses, and lifespan is reduced. Although the clinical and pathological phenotypes are distinct for each CAG repeat expansion disorder, it is thought that similar molecular mechanisms underlie the effect of expanded CAG repeats in different genes. The predicted Age of Onset (AO) for both HD, SCA1 and SCA3 (and 5 other CAG-repeat diseases) is based on the polyQ expansion, but the CAG/polyQ determines the AO only for 50% (see figure below). A large variety on AO is observed, especially for the most common range between 40 and 50 repeats11,12. Large differences in onset, especially in the range 40-50 CAGs not only imply that current individual predictions for AO are imprecise (affecting important life decisions that patients need to make and also hampering assessment of potential onset-delaying intervention) but also do offer optimism that (patient-related) factors exist that can delay the onset of disease.To address both items, we need to generate a better model, based on patient-derived cells that generates parameters that not only mirror the CAG-repeat length dependency of these diseases, but that also better predicts inter-patient variations in disease susceptibility and effectiveness of interventions. Hereto, we will use a staggered project design as explained in 5.1, in which we first will determine which cellular and molecular determinants (referred to as landscapes) in isogenic iPSC models are associated with increased CAG repeat lengths using deep-learning algorithms (DLA) (WP1). Hereto, we will use a well characterized control cell line in which we modify the CAG repeat length in the endogenous ataxin-1, Ataxin-3 and Huntingtin gene from wildtype Q repeats to intermediate to adult onset and juvenile polyQ repeats. We will next expand the model with cells from the 3 (SCA1, SCA3, and HD) existing and new cohorts of early-onset, adult-onset and late-onset/intermediate repeat patients for which, besides accurate AO information, also clinical parameters (MRI scans, liquor markers etc) will be (made) available. This will be used for validation and to fine-tune the molecular landscapes (again using DLA) towards the best prediction of individual patient related clinical markers and AO (WP3). The same models and (most relevant) landscapes will also be used for evaluations of novel mutant protein lowering strategies as will emerge from WP4.This overall development process of landscape prediction is an iterative process that involves (a) data processing (WP5) (b) unsupervised data exploration and dimensionality reduction to find patterns in data and create “labels” for similarity and (c) development of data supervised Deep Learning (DL) models for landscape prediction based on the labels from previous step. Each iteration starts with data that is generated and deployed according to FAIR principles, and the developed deep learning system will be instrumental to connect these WPs. Insights in algorithm sensitivity from the predictive models will form the basis for discussion with field experts on the distinction and phenotypic consequences. While full development of accurate diagnostics might go beyond the timespan of the 5 year project, ideally our final landscapes can be used for new genetic counselling: when somebody is positive for the gene, can we use his/her cells, feed it into the generated cell-based model and better predict the AO and severity? While this will answer questions from clinicians and patient communities, it will also generate new ones, which is why we will study the ethical implications of such improved diagnostics in advance (WP6).
Ouderen hebben bij een stijgende leeftijd een grotere kans op frailty (kwetsbaarheid), een toestand van verminderde reservecapaciteit die ontstaat door afname van fysieke, psychologische en sociale capaciteit. Een relatief kleine aandoening of gebeurtenis kan een sterke achteruitgang in functioneren en zorgafhankelijkheid veroorzaken, waardoor ernstige complicaties kunnen ontstaan, zoals valincidenten, ziekenhuisopname en vroegtijdig overlijden. Het is daarom van belang dat (toekomstige) zorgverleners vroegtijdig en adequaat ingrijpen om frailty te voorkomen/verminderen. Dit project is ingebed in het Centre of Expertise Healthy Ageing (speerpunt FRAILTY), het Lectoraat Healthy Ageing, Allied Health Care and Nursing (LAHC) en het SPRONG-onderzoeksprogramma FAITH, welke focust op frailty. Praktijkpartners maken structureel onderdeel uit van FAITH en van het lectoraat. Het onderzoek sluit aan bij bestaande innovatie-/kenniswerkplaatsen waarin onderwijs, onderzoek en praktijk al samenwerken. Op dit moment worden o.a. de behoeften van werkveldpartners geïnventariseerd door een student aan de hand van interviews. Er zijn veel instrumenten voorhanden om de frailty status van een cliënt te bepalen. Echter deze worden in de praktijk vaak niet gebruikt. De (toekomstige) professional beoordeelt frailty soms helemaal niet of alleen globaal op eigen oordeel. Het gevolg hiervan is dat de cliënt niet optimaal behandeld wordt met alle medische en economische (kosten) gevolgen van dien. Het doel van dit project is om: • Het professioneel handelen te versterken door het concept frailty toepasbaar te maken voor de zorgpraktijk en het zorgonderwijs • Toepasbare assessmenttools te ontwikkelen waarmee frailty beoordeeld kan worden en leidend kunnen zijn in de keuze voor interventies en dit te implementeren in het onderwijs • Te analyseren wat de kostenbesparing is voor de gezondheidszorg als de professional het bruikbare meetinstrument of set instrumenten tijdig en optimaal inzet vergeleken met de huidige situatie waarin dit niet gebeurt (zoals boven beschreven). Bedoeling is om de postdoc-positie na 2 jaar te continueren en structureel te maken.
To optimize patient care, it is vital to prevent infections in healthcare facilities. In this respect, the increasing prevalence of antibiotic-resistant bacterial strains threatens public healthcare. Current gold standard techniques are based on classical microbiological assays that are time consuming and need complex expensive lab environments. This limits their use for high throughput bacterial screening to perform optimal hygiene control. The infection prevention workers in hospitals and elderly nursing homes underline the urgency of a point-of-care tool that is able to detect bacterial loads on-site in a fast, precise and reliable manner while remaining with the available budgets. The aim of this proposal titled SURFSCAN is to develop a novel point-of-care tool for bacterial load screening on various surfaces throughout the daily routine of professionals in healthcare facilities. Given the expertise of the consortium partners, the point-of-care tool will be based on a biomimetic sensor combining surface imprinted polymers (SIPs), that act as synthetic bacterial receptors, with a thermal read-out strategy for detection. The functionality and performance of this biomimetic sensor has been shown in lab conditions and published in peer reviewed journals. Within this proposal, key elements will be optimized to translate the proof of principle concept into a complete clinical prototype for on-site application. These elements are essential for final implementation of the device as a screening and assessment tool for scanning bacterial loads on surfaces by hospital professionals. The research project offers a unique collaboration among different end-users (hospitals and SMEs), and knowledge institutions (Zuyd University of Applied Sciences, Fontys University of Applied Sciences and Maastricht Science Programme, IDEE-Maastricht University), which guarantees transfer of fundamental knowledge to the market and end-user needs.
