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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Introduction: The transition from hospital to home is often suboptimal, resulting in patients not receiving the necessary allied healthcare after discharge. This may, in turn, lead to delayed recovery, a higher number of readmissions, more emergency department visits and an increase in mortality and healthcare costs. This study aimed to gain insight into patients' experiences, perceptions, and needs regarding hospital-to-home transition, focusing on allied healthcare as a first step towards the development of a transitional integrated allied healthcare pathway for patients with complex care needs after hospital discharge. Methods: We conducted semistructured interviews with patients. Participants were recruited from universities and general hospitals in the Amsterdam region between May and July 2023. They were eligible if they (1) were discharged from the hospital minimally 3 and maximally 12 months after admission to an oncologic surgery department, internal medicine department, intensive care unit, or trauma centre, (2) received hospital-based care from at least one allied healthcare provider, who visited the patient at least twice during hospital admission, (3) spoke Dutch or English and (4) were 18 years or older. Interviews were audio-recorded and transcribed verbatim. We performed a thematic analysis of the interview data. Results: Nineteen patients were interviewed. Three themes emerged from the analysis. ‘Allied healthcare support during transition’ depicts patients' positive experiences when they felt supported by allied health professionals during the hospital-to-home transition. ‘Patient and family involvement’ illustrates how much patients value the involvement of their family members during discharge planning. ‘Information recall and processing’ portrays the challenges of understanding and remembering overwhelming amounts of information, sometimes unclear and provided at the wrong moment. Overall, patients' experiences of transitional care were positive when they were involved in the discharge process. Negative experiences occurred when their preferences for postdischarge communication were ignored. Conclusions: This study suggests that allied health professionals need to continuously collaborate and communicate with each other to provide patients and their families with the personalized support they need. To provide high-quality and person-centred care, it is essential to consider how, when, and what information to provide to patients and their families to allow them to contribute to their recovery actively. Patient or Public Contribution: The interview guide for this manuscript was developed with the assistance of patients, who reviewed it and provided us with feedback. Furthermore, patients provided us with their valuable lived experiences by participating in the interviews conducted for this study.
Referral to home-based cardiac rehabilitation (HBCR) is low among older and frailer patients due to low expectations regarding adherence by healthcare professionals. The aim of this study was to determine adherence to HBCR when old and frail patients are referred, and to explore any differences in baseline characteristics between adherent and nonadherent patients. Data of the Cardiac Care Bridge were used (Dutch trial register NTR6316). The study included hospitalized cardiac patients ≥ 70 years old and at high risk of functional loss. Adherence to HBCR was confirmed when two-thirds of the intended nine sessions were followed. Of the 153 patients included (age: 82 ± 6 years, 54% female), 29% could not be referred due to death before referral, not returning home, or practical problems. Of the 109 patients who were referred, 67% adhered. Characteristics associated with non-adherence were older age (84 ± 6 vs. 82 ± 6, p = 0.05) and higher handgrip strength in men (33 ± 8 vs. 25 ± 11, p = 0.01). There was no difference in comorbidity, symptoms, or physical capacity. Based on these observations, most older cardiac patients who return home after hospital admission appear to adhere to HBCR after referral, suggesting that most older cardiac patients are motivated and capable of receiving HBCR.
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).
For English see below In dit project werkt het Lectoraat ICT-innovaties in de Zorg van hogeschool Windesheim samen met zorganisaties de ZorgZaak, De Stouwe, en IJsselheem en daarnaast Zorgcampus Noorderboog, Zorgtrainingscentrum Regio Zwolle, Patiëntenfederatie NPCF, VitaalThuis, ActiZ, Vilans, V&VN, Universiteit Twente en het Lectoraat Innoveren in de Ouderenzorg van Windesheim aan het in staat stellen van wijkverpleegkundigen om autonoom en doelmatig, op basis van klinisch redeneren, eHealth te indiceren en in te zetten bij cliënten. De aanleiding voor dit project wordt gevormd door de wijzigingen per 1 januari 2015 in de Zorgverzekeringswet. Wijkverpleegkundigen zijn sindsdien zelf verantwoordelijk voor de indicatiestelling en zorgtoewijzing voor verzorging en verpleging thuis: zij moeten bepalen welke zorg hun cliënten nodig hebben gezien hun individuele situaties, en hoe die zorg het best geleverd kan worden. Zorgverzekeraars leggen hierbij minimumeisen op, o.a. met betrekking tot de inzet van eHealth. Wijkverpleegkundigen hebben op dit moment echter niet of nauwelijks ervaring met het inzetten en toepassen van technologische toepassingen zoals eHealth. Vraagarticulatie leidde tot de volgende praktijkvraagstelling: 1. Hoe kunnen wijkverpleegkundigen worden voorzien in hun informatiebehoefte over eHealth? 2. Hoe kunnen wijkverpleegkundigen worden ondersteund in hun klinisch redeneren over het inzetten van eHealth bij hun cliënten? 3. Hoe kunnen wijkverpleegkundigen worden ondersteund bij het inzetten van eHealth in hun zorgproces? Het project levert hiertoe drie bijdragen: - De eerste bijdrage is een duurzaam geborgde keuzehulp (een app voor tablet of smartphone) waarmee wijkverpleegkundigen toegang hebben tot de benodigde informatie over eHealth-toepassingen en die aansluit bij de manier waarop wijkverpleegkundigen zorg indiceren (bijvoorbeeld door relaties te leggen tussen NIC-interventies en bijpassende eHealth-toepassingen). - Informatievoorziening is niet een afdoende antwoord op de handelingsverlegenheid van de wijkverpleegkundige omdat eHealth sterk in ontwikkeling is en blijft waardoor er altijd een discrepantie zal bestaan tussen de beschikbare en de benodigde informatie. . De tweede bijdrage van dit project is daarom kennis over (en inzicht in) het klinisch redeneren over de inzet van eHealth. Deze kennis wordt in het project doorvertaald naar een trainingsmodule die erop is gericht om het klinisch redeneren van wijkverpleegkundigen over het inzetten van eHealth en andere thuiszorgtechnologie bij hun cliënten te versterken. - De derde bijdrage van dit project omhelst inbedding van bovengenoemde resultaten in het verpleegkunde-onderwijs van onder meer Windesheim en in nascholingstrajecten voor wijkverpleegkundigen. Voor duurzame, bredere inbedding in het onderwijs wordt samengewerkt met regionale zorgonderwijsnetwerken. In this project the research group IT-innovations in Health Care of Windesheim University of Applied Sciences cooperates with care organisations de ZorgZaak, De Stouwe, and IJsselheem, and stakeholders Zorgcampus Noorderboog, Zorgtrainingscentrum Regio Zwolle, Patiëntenfederatie NPCF, VitaalThuis, ActiZ, Vilans, V&VN, University of Twente, and research group Innovation of Care of Older Adults of Windesheim to enable home care nurses to autonomously and adequately, based on clinical reasoning, allocate eHealth and implement it in patient care. The motivation behind this project lies in the alterations in the care insurance legislation per January 2015. Since then, home care nurses are responsible for the care allocation of all care at home: they determine which care their clients require, taking into account the individual situations, and how this care can best be delivered. Care insurance companies impose minimum requirements for this allocation of home care, among others concerning the implementation of eHealth. Home care nurses, however, have no or limited information about and experience with technical applications like eHealth. Articulation of the demands of home care nurses resulted in the following questions: 1. How can home care nurses be provided with information concerning eHealth? 2. How can home care nurses be supported in their clinical reasoning about the deployment of eHealth by their patients? 3. How can home care nurses be supported when deploying eHealth in their care process? This project contributes in three ways: " The first contribution is a sustainable selection tool (an app for tablet or smartphone) to be used by home care nurses to provide them with the required information about eHealth applications. This selection tool will work in accordance with how home care nurses allocate care, e.g. by relating NIC-interventions to matching eHealth applications. " Providing information is an insufficient, although necessary, answer to the demands of home care nurses because of continuously developing eHealth applications. Hence, the second contribution of this project is knowledge about (and insight in) the clinical reasoning about the deployment of eHealth. This knowledge will be converted into a training module aimed at strengthening the clinical reasoning about the deployment of eHealth by their patients. " The third contribution of this project concerns embedding the selection tool and the training module in regular education (among others at Windesheim) and in refresher courses for home care nurses. Cooperation with regional care education networks will ensure sustainable and broad embedding of both the selection tool and the training module.
The findings suggests that participation in music practices can significantly support caregivers' and nurses' contact with the people to whom they give care and the healthcare professionals' insights into the patients' and residents' personhood. Music can create experienced changes in the care environment through kairotic moments of connectivity and intimacy of the musical interaction. The music sessions support and reinforce the person-centred values of care delivery.The meaning of participatory music practices for the well-being and learning of healthcare professionals working with ageing patients and nursing home residents.
