Background: To be accountable to laws and regulations, healthcare professionals spend more than 40% of their time on administrative tasks. The Compulsory Mental Healthcare Act (CMHA) was introduced in Dutch mental healthcare in 2020. It was hypothesized that this legislative amendment would raise the administrative burden for some care professionals. Pilot studies in 2020 and 2021 visualized the exponentially rise of the administrative burden for care professionals, especially psychiatrists due to the transition. However the total response was too small and not generalizable. Aim: gain more nationwide insight in the hypothesized raise of administrative burden of psychiatrists due to the implementation of the CMHA. Method: Under the leadership of an advisory board of three medical director psychiatrists, a Likert scale questionnaire was further developed to investigate the administrative burden of psychiatrists in the Netherlands before and after transition. Open-ended questions provided the opportunity for feedback from the psychiatrists. The study was supported by the Department of Medical Directors (DMD) of The Netherlands Psychiatric Association (NPA). Results: all mental health institutions members of the DMD of the NPA received an invitation to participate. 14 institutions (total N=158) responded. The data show a significant change in the time spent on administrative tasks, the usefulness of the administrative actions, the fit for use and ease of use of supporting systems. The forementioned all decreased significantly after the implementation. Conclusion and discussion: Psychiatrists spend more time on administration than before the legislative amendment instead of helping vulnerable patients. None of the institutions has been able to use the transition to its advantage given the time spent on administrative tasks and the usefulness of these tasks. This is an unacceptable development in the field of mental health in the Netherlands and should be addressed to those who are responsible for the decision making, especially policy makers. These results show that the introduction of the CMHA have made the field of Dutch mental health an impossible area to work for. , Administrative burden, Legislative amendment, Public governance, Information Management
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Objective To evaluate the effects of a psycho-educational intervention on caregiver burden in partners of patients with postoperative heart failure. Background Since partners of cardiac surgery patients play a significant role in the patient’s recovery, it is important to address their needs during hospitalization and after discharge. Methods Forty-two patients with postoperative heart failure and their partners participated in a randomized controlled pilot study. Dyads in the intervention group received psycho-educational support from a multidisciplinary team. Dyads in the control group received usual care. Results No significant differences were found in the performance of caregiving tasks and perceived caregiver burden in the control versus the intervention group. Conclusion A pilot study exploring the effects of a psycho-educational intervention in patients and their partners did not reveal significant effects with regard to reduced feelings of burden in partners. Alleviating caregiver burden in partners may need a more intense or specific approach.
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BACKGROUND: Critical illness and the problems faced after ICU discharge do not only affect the patient, it also negatively impacts patients' informal caregivers. There is no review which summarizes all types of burden reported in informal caregivers of ICU survivors. It is important that the burdens these informal caregivers suffer are systematically assessed so the caregivers can receive the professional care they need. We aimed to provide a complete overview of the types of burdens reported in informal caregivers of adult ICU survivors, to make recommendations on which burdens should be assessed in this population, and which tools should be used to assess them.METHOD: We performed a systematic search in PubMed and CINAHL from database inception until June 2014. All articles reporting on burdens in informal caregivers of adult ICU survivors were included. Two independent reviewers used a standardized form to extract characteristics of informal caregivers, types of burdens and instruments used to assess these burdens. The quality of the included studies was assessed using the Newcastle-Ottawa and the PEDro scales.RESULTS: The search yielded 2704 articles, of which we included 28 in our review. The most commonly reported outcomes were psychosocial burden. Six months after ICU discharge, the prevalence of anxiety was between 15% and 24%, depression between 4.7% and 36.4% and post-traumatic stress disorder (PTSD) between 35% and 57.1%. Loss of employment, financial burden, lifestyle interference and low health-related quality of life (HRQoL) were also frequently reported. The most commonly used tools were the Hospital Anxiety and Depression Scale (HADS), Centre for Epidemiological Studies-Depression questionnaire, and Impact of Event Scale (IES). The quality of observational studies was low and of randomized studies moderate to fair.CONCLUSIONS: Informal caregivers of ICU survivors suffer a substantial variety of burdens. Although the quality of the included studies was poor, there is evidence that burden in the psychosocial field is most prevalent. We suggest screening informal caregivers of ICU survivors for anxiety, depression, PTSD, and HRQoL using respectively the HADS, IES and Short Form 36 and recommend a follow-up period of at least 6 months.
De technische en economische levensduur van auto’s verschilt. Een goed onderhouden auto met dieselmotor uit het bouwjaar 2000 kan technisch perfect functioneren. De economische levensduur van diezelfde auto is echter beperkt bij introductie van strenge milieuzones. Bij de introductie en verplichtstelling van geavanceerde rijtaakondersteunende systemen (ADAS) zien we iets soortgelijks. Hoewel de auto technisch gezien goed functioneert kunnen verouderde software, algorithmes en sensoren leiden tot een beperkte levensduur van de gehele auto. Voorbeelden: - Jeep gehackt: verouderde veiligheidsprotocollen in de software en hardware beperkten de economische levensduur. - Actieve Cruise Control: sensoren/radars van verouderde systemen leiden tot beperkte functionaliteit en gebruikersacceptatie. - Tesla: bij bestaande auto’s worden verouderde sensoren uitgeschakeld waardoor functies uitvallen. In 2019 heeft de EU een verplichting opgelegd aan automobielfabrikanten om 20 nieuwe ADAS in te bouwen in nieuw te ontwikkelen auto’s, ongeacht prijsklasse. De mate waarin deze ADAS de economische levensduur van de auto beperkt is echter nog onvoldoende onderzocht. In deze KIEM wordt dit onderzocht en wordt tevens de parallel getrokken met de mobiele telefonie; beide maken gebruik van moderne sensoren en software. We vergelijken ontwerpeisen van telefoons (levensduur van gemiddeld 2,5 jaar) met de eisen aan moderne ADAS met dezelfde sensoren (levensduur tot 20 jaar). De centrale vraag luidt daarom: Wat is de mogelijke impact van veroudering van ADAS op de economische levensduur van voertuigen en welke lessen kunnen we leren uit de onderliggende ontwerpprincipes van ADAS en Smartphones? De vraag wordt beantwoord door (i) literatuuronderzoek naar de veroudering van ADAS (ii) Interviews met ontwerpers van ADAS, leveranciers van retro-fit systemen en ontwerpers van mobiele telefoons en (iii) vergelijkend rij-onderzoek naar het functioneren van ADAS in auto’s van verschillende leeftijd en prijsklassen.
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 purpose of this project was to create a roadmap with selected mechanisms to assist destination management organisations to optimize the benefits generated by tourism for their destination communities and ensure that it is shared equitably. By providing tools to identify and address inequality in terms of access to the benefits and value tourism generates, it is envisaged that a more equitable tourism model can be implemented leading to the fair distribution of benefits in destination communities, potentially increasing the value for previously excluded or underserved groups. To produce the roadmap, the study team will explore the range of challenges that hinder the equitable distribution of tourism-induced benefits in destinations as well as the enabling factors that influence the extent to which this is achieved. The central question the research team has set out to answer is the following: What does an equitable tourism model look like for destination communities?Societal issueHowever, while those directly involved in tourism will gain the most, the burden of hosting visitors is widely felt by local communities. This imbalance has, unsurprisingly, sparked civil mobilisations and protests in destinations around the world. It’s clear that placemaking and benefit-sharing must be part of the future of destination management to maintain public support. This project addressed issues around equity (environmental, economic, spatial, cultural and tourism experience). In line with the intentions set out in the CELTH Agenda Conscious Destinations.Benefit to societyBased on 25 case studies around 40 mechanisms were identified that can grow or better distribute the value from tourism, so that more people in destination communities benefit. These mechanisms are real-world practices already in use. DMOs and NTOs can consider introducing the mechanisms that best fit their destination context, pulling levers such as: taxes and revenue sharing, business incubation and training, licencing and zoning, community enterprises and volunteering, and product development..This report also outlines a pathway to an Equity-Driven Management (EDM) approach, which is grounded in participatory decision-making principles and aims to create a more equitable tourism system by strengthening the hand of destination governance and retaining control of local resources.Collaborative partnersNBTC, the Travel Foundation, Destination Think, CELTH, ETFI, HZ.
