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.
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BackgroundSurvivors of critical illness experience long-term functional challenges, which are complex, heterogeneous, and multifactorial in nature. Although the importance of rehabilitation interventions after intensive care unit (ICU) discharge is universally recognized, evidence on feasibility and effectiveness of home-based rehabilitation programs is scarce and ambiguous. This study investigates the feasibility of an interdisciplinary rehabilitation program designed for patients with Post-Intensive Care Syndrome (PICS) who are discharged home.MethodsA mixed method, non-randomized, prospective pilot feasibility study was performed with a 6-month follow-up, comparing the intervention (REACH) with usual care. REACH was provided by trained professionals and included a patient-centered, interdisciplinary approach starting directly after hospital discharge. Primary outcomes were patient safety, satisfaction, adherence, referral need and health care usage. Secondary outcomes, measured at 3 timepoints, were functional exercise capacity, self-perceived health status, health-related quality of life (HRQoL), return to work and psychotrauma. Risk of undernutrition was assessed at baseline.Results43 patients with a median mechanical ventilation duration of 8 (IQR:10) days, were included in the study and 79.1% completed 6-month follow-up. 19 patients received the intervention, 23 received usual care. Groups were similar for gender distribution and ICU length of stay. No adverse events occurred. REACH participants showed higher satisfaction with treatment and reported more allied health professional visits, while the usual care group reported more visits to medical specialists. Qualitative analysis identified positive experiences among REACH-professionals related to providing state-of-the-art interventions and sharing knowledge and expertise within an interprofessional network. Similar recovery was seen between groups on all secondary outcomes, but neither group reached reference values for HRQoL at 6 months. Larger return to work rates were seen in the REACH group. Prevalence of undernutrition at hospital discharge was high in both groups (> 80%), warranting the need for careful tuning of physical therapy and nutritional interventions.ConclusionsThis study shows that providing early, home-based rehabilitation interventions for patients with PICS-related symptoms is feasible and perceived positively by patients and professionals. When provided in an interdisciplinary collaborative network state of the art, person-centered interventions can be tailored to individual needs potentially increasing patient satisfaction, adherence, and efficacy.Registered in the Dutch Trial register: NL7792: https://www.trialregister.nl/trial/7792, registered 7-06-2019.
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ObjectiveMany patients with coronavirus disease 2019 (COVID-19) infections were admitted to an intensive care unit (ICU). Physical impairments are common after ICU stays and are associated with clinical and patient characteristics. To date, it is unknown if physical functioning and health status are comparable between patients in the ICU with COVID-19 and patients in the ICU without COVID-19 3 months after ICU discharge. The primary objective of this study was to compare handgrip strength, physical functioning, and health status between patients in the ICU with COVID-19 and patients in the ICU without COVID-19 3 months after ICU discharge. The second objective was to identify factors associated with physical functioning and health status in patients in the ICU with COVID-19. Methods In this observational, retrospective chart review study, handgrip strength (handheld dynamometer), physical functioning (Patient-Reported Outcomes Measurement Information System Physical Function), and health status (EuroQol 5 Dimension 5 Level) were compared between patients in the ICU with COVID-19 and patients in the ICU without COVID-19 using linear regression. Multilinear regression analyses were used to investigate whether age, sex, body mass index, comorbidities in medical history (Charlson Comorbidity Index), and premorbid function illness (Identification of Seniors At Risk-Hospitalized Patients) were associated with these parameters in patients in the ICU with COVID-19. Results In total, 183 patients (N = 92 with COVID-19) were included. No significant between-group differences were found in handgrip strength, physical functioning, and health status 3 months after ICU discharge. The multilinear regression analyses showed a significant association between sex and physical functioning in the COVID-19 group, with better physical functioning in men compared with women. Conclusion Current findings suggest that handgrip strength, physical functioning, and health status are comparable for patients who were in the ICU with COVID-19 and patients who were in the ICU without COVID-19 3 months after ICU discharge. Impact Aftercare in primary or secondary care in the physical domain of postintensive care syndrome after ICU discharge in patients with COVID-19 and in patients without COVID-19 who had an ICU length of stay >48 hours is recommended. Lay Summary Patients who were in the ICU with and without COVID-19 had a lower physical status and health status than healthy people, thus requiring personalized physical rehabilitation. Outpatient aftercare is recommended for patients with an ICU length of stay >48 hours, and functional assessment is recommended 3 months after hospital discharge.
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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).
The admission of patients to intensive care units (ICU) is sometimes planned after a large operation. However, most admissions are acute, because of life-threatening infections or trauma as a result of accidents. Their stay can last from a couple of days to a couple of weeks. ICU patients are often in pain, in fragile health condition, and connected to various devices such as a ventilator, intravenous drip, and monitoring equipment. The resulting lack of mobilization, makes patients lose 1-3% of muscle power for each day they are in the ICU. Within 2 weeks, patients can lose up to 50% of their muscle mass. Early mobilization of ICU patients reduces their time on a respirator and their hospital length of stay. Because of this, ICUs have started early mobilization physical therapy. However, there is a lack of solutions for patients that properly handle fear of movement, are sufficiently personalized to the possibilities and needs of the individual and motivate recurring use in this context. Meanwhile, various technological advances enable new solutions that might bring benefits for this specific use case. Hospitals are experimenting with screens and projections on walls and ceilings to improve their patients’ stay. Standalone virtual reality and mixed reality headsets have become affordable, available and easy to use. In this project, we want to investigate: How can XR-technologies help long-stay ICU patients with early mobilization, with specific attention to the issues of fear of movement, personalization to the individual’s possibilities, needs and compliance over multiple sessions? The research will be carried out in co-creation with the target group and will consist of a state-of-the-art literature review and an explorative study.
