Background: To prevent deterioration after admission to the intensive care unit (ICU), and to improve rehabilitation, the ICU team should use digital technologies to provide comprehensive and practical information alongside personalised support for survivors and their family members. However, a knowledge gap exists on the users’ preferences for such an e-health platform in ICU follow-up services. Objectives: This study aims to explore the opinions and priorities for an e-health platform, including choices in digital elements, according to survivors of critical illness and their family members. Methods: A cross-sectional survey was used among members and other interested individuals of the Dutch volunteer organisation ‘Foundation Family- and Patient-Centred Intensive Care’. An investigator-developed questionnaire was disseminated through the newsletter and social media channels of the Foundation Family- and Patient-Centred Intensive Care. The results of this member consultation were analysed and reported as descriptive statistics on demographic variables and outcome measures in opinions and priorities of the participants. Results: Most of the 227 participants were female (76%), aged 46–55 years (33%), and completed higher education (70%). The participants reported high confidence in advice delivered through an e-health platform (72%). They prioritised the provision of a guide including relevant professionals who may support them during their recovery when using an e-health platform. Conclusions: ICU survivors prioritised the provision of relevant professionals who may support them during their recovery when using an e-health platform; however, selection bias means the population studied is likely to be more digitally connected than the general ICU population. Digital solutions could cater to their information and support needs. For family members, the highest priority reported was receiving help in managing their emotional distress. The development of an e-health platform considering the opinions and priorities of this target group could contribute to a personalised recovery trajectory promoting self-management while including digital elements addressing relevant ICU follow-up services.
MULTIFILE
Emerging evidence suggests that exogenous protein/amino acid supplementation has the potential to improve the recovery of critically ill patients. After a careful review of the published evidence, experts have concluded that critically ill patients should receive up to 2.0-2.5 g/kg/d of protein. Despite this, however, recent review of current International Nutrition Survey data suggests that protein in critically ill patients is underprescribed and grossly underdelivered. Furthermore, the survey suggests that most of protein administration comes from enteral nutrition (EN) despite the availability of products and protocols that enhance the delivery of protein/amino acids in the intensive care unit (ICU) setting. While future research clarifies the dose, timing, and composition for exogenous protein administration, as well as identification of patients who will benefit the most, ongoing process improvement initiatives should target a concerted effort to increase protein intake in the critically ill. This assertion follows from the notion that current patients are possibly being harmed while we wait for confirmatory evidence. Further research should also develop better tools to enable bedside practitioners to monitor optimal or adequate protein intake for individual patients. Finally, exploring the effect of combining adequate protein delivery with early mobility and/or resistance exercise in the ICU setting has the greatest potential for improving the functional outcomes of survivors of critical illness and warrants further study.
Emerging evidence suggests that exogenous protein/amino acid supplementation has the potential to improve the recovery of critically ill patients. After a careful review of the published evidence, experts have concluded that critically ill patients should receive up to 2.0-2.5 g/kg/d of protein. Despite this, however, recent review of current International Nutrition Survey data suggests that protein in critically ill patients is underprescribed and grossly underdelivered. Furthermore, the survey suggests that most of protein administration comes from enteral nutrition (EN) despite the availability of products and protocols that enhance the delivery of protein/amino acids in the intensive care unit (ICU) setting. While future research clarifies the dose, timing, and composition for exogenous protein administration, as well as identification of patients who will benefit the most, ongoing process improvement initiatives should target a concerted effort to increase protein intake in the critically ill. This assertion follows from the notion that current patients are possibly being harmed while we wait for confirmatory evidence. Further research should also develop better tools to enable bedside practitioners to monitor optimal or adequate protein intake for individual patients. Finally, exploring the effect of combining adequate protein delivery with early mobility and/or resistance exercise in the ICU setting has the greatest potential for improving the functional outcomes of survivors of critical illness and warrants further study.
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).
Slaap is essentieel voor het herstellen van ziekte en om verwardheid te voorkomen en verminderen. Ernstig zieke patiënten, op de Intensive Care (IC), Medium Care (MC) of Cardiac Care Unit (CCU), slapen vaak onvoldoende door de aanwezigheid van veel externe prikkels (licht, geluid, alarmen, aanwezigheid personeel). Hierdoor is de leefomgeving op deze afdelingen erg onrustig. Patiënten vinden deze onrust en het gebrek aan privacy een groot probleem. Voor verpleegkundigen veroorzaken patiënten die ’s nachts wakker zijn een verhoging van de werkdruk. De startup Micro-Cosmos wil ernstig zieke patiënten in staat te stellen om een ‘micro-omgeving’ te creëren, waarin zij in eigen regie externe prikkels zoals licht en geluid buiten kunnen sluiten. Dit gebeurt via een innovatieve kap, de Maya, die aan het hoofdeinde van het bed wordt geplaatst. De Maya heeft als doel de slaapkwaliteit te verbeteren, en verwardheid, angst en stress te reduceren. Ook maakt de Maya het mogelijk om te ‘cocoonen’ en zorgt daarmee voor comfort en privacy. Door de ziekenhuis leefomgeving positief te beïnvloeden draagt de Maya bij aan een verbetering van de kwaliteit van zorg voor kritisch zieke en kwetsbare patiënten. In een pilot studie gaan we de haalbaarheid, de effecten (effect size) en de ervaringen van 20 patiënten en van zorgverleners in een gerandomiseerde cross-over design studie op de IC, MC en CCU testen. Hierbij wordt de Maya om de dag ingezet waarbij de volgorde gerandomiseerd is. Op de dagen dat de Maya niet wordt gebruikt, wordt standaard zorg geleverd. Objectieve en subjectieve informatie wordt gebruikt voor verdere optimalisatie van het Maya prototype en voor effectmaat bepaling voor aanvullend onderzoek. De netwerken van het Radboudumc en Micro-Cosmos worden gebruikt voor kennisverspreiding en toekomstig aanvullend onderzoek in groter verband. Opgedane resultaten worden door het Radboudumc na afloop overgedragen aan Micro-Cosmos.
Zorg op maat voor patiënten met het post-intensive care syndroom: Dankzij verbeteringen in de zorg overleven steeds meer Intensive Care (IC) patiënten een levensbedreigende ziekte. De keerzijde is dat steeds meer patiënten met langdurige lichamelijke en mentale klachten als gevolg van het Post-Intensive Care Syndroom (PICS) uit het ziekenhuis worden ontslagen. Positieve gezondheid: een nieuw concept met focus op de kracht en eigen regie van mensen: In 2012 introduceerde arts onderzoeker Huber een nieuwe definitie van gezondheid, namelijk “Gezondheid als het vermogen van mensen zich aan te passen en een eigen regie te voeren in het licht van fysieke, emotionele en sociale uitdagingen van het leven”. Het concept Positieve gezondheid bevordert persoonsgerichte zorg en sluit goed aan bij wat voor de patiënt belangrijk is. Patiënten na een IC opname willen thuis een eigen regie kunnen voeren: De meeste patiënten met PICS ontvangen na ontslag uit het ziekenhuis fysiotherapie bij een 1e lijns fysiotherapeut. Deze ontvangen niet alle noodzakelijke informatie van het ziekenhuis over het ziekteverloop van de patiënt en zijn onvoldoende bekend met de gevolgen van PICS. Feitelijk heeft het zorgveld te maken met een nieuw ziektebeeld waarvoor nog geen revalidatiebehandeling bestaat. De diversiteit aan klachten worden niet op een juiste manier geïnterpreteerd en/of in een logische volgorde geadresseerd in een behandelplan. Bij PICS komen de dimensies van het concept van Huber naar voren en zal de zorgverlener – primair de fysiotherapeut - in overleg met de patiënt de terreinen moeten identificeren waarop ondersteuning noodzakelijk is. Het doel van dit RAAK project is om in een Community of Practice van professionals, studenten en patiënten een transmuraal fysiotherapieprogramma te ontwikkelen om patiënten die met PICS naar huis worden ontslagen optimaal te ondersteunen. Aan het einde van het project is een fysiotherapieprogramma ontwikkeld voor PICS en geïmplementeerd volgens het concept ‘Positieve gezondheid’. Daarnaast is kennis over de behandeling van patiënten met PICS gedissemineerd binnen de 1e lijns fysiotherapie en het (post)HBO onderwijs.
