Summary Purpose The purpose of this study was to investigate the adoption and actual use of a digital dietary monitoring system (DDMS) and its impact on patient satisfaction with the provided hospital care, body weight changes and health-related quality of life (HRQoL) in patients with potentially curable esophageal cancer planned for surgery. The DDMS enables patients and dietitians to monitor patients' nutritional intake and body weight during the preoperative period. Methods In this prospective observational study, the first 47 included patients received usual nutritional care, and were followed from diagnosis until surgery. After implementation of the DDMS 37 patients were followed, again from diagnosis until surgery. Main outcomes were actual use of the DDMS, by means of adoption and usage measures, overall patient satisfaction (EORTC-INPATSAT32), weight change and HRQoL (EORTC QLQ-C30 and EORTC-OG25). Outcomes were assessed immediately after diagnosis, and 6 and 12 weeks later. Results The system had an adoption rate of 64% and a usage rate of 78%. No significant effects on patient satisfaction were found at 12 weeks after diagnosis between the intervention and the usual care group. The implementation of the DDMS also had no significant effect on body weight and HRQoL over time. Conclusions Patients with potentially curable esophageal cancer planned for surgery were able to use the DDMS. However, no significant effects on patient satisfaction, body weight changes and HRQoL were observed. Further research should focus on the specific needs of patients regarding information and support to preoperatively optimize nutritional intake and nutritional status.
MULTIFILE
Background: To assess the prevalence of chronic lymphedema and trismus in patients > 6 months after head and neck cancer (HNC) treatment, and to explore how the severity of these conditions correlates with body image and quality of life. Methods: The cross-sectional sample included 59 patients, treated for HNC between six months to three years ago. Physical measurements were performed to assess the presence of external lymphedema and trismus (<36 mm). Furthermore, participants completed two questionnaires regarding body image (BIS) and quality of life (UW-QoL V4). Results: Lymphedema prevalence was 94.1% (95% CI 0.86–0.98), with a median severity score of 9 (range 0–24). Trismus prevalence in this sample was 1.2%. The median BIS score was 2, indicating a positive body image. The UW-QoL score showed a good QOL with a median of 100. Only the domain of saliva and overall related health had a lower median of 70 and 60, respectively. There was no correlation between lymphedema and body image (r = 0.08, p = 0.544). Patients with higher lymphedema scores reported poorer speech with a moderate correlation (r = −0.39, p = 0.003). Conclusion: Lymphedema is a highly prevalent, but moderately severe late side-effect of HNC with a limited impact on quality of life domains except for speech, in our cohort.
The impacts of tourism on destinations and the perceptions of local communities have been a major concern both for the industry and research in the past decades. However, tourism planning has been mainly focused on traditions that promote the increase of tourism without taking under consideration the wellbeing of both residents and visitors. To develop a more sustainable tourism model, the inclusion of local residents in tourism decision-making is vital. However, this is not always possible due to structural, economic and socio-cultural restrictions that residents face resulting to their disempowerment. This study aims to explore and interpret the formal processes around tourism decision-making and community empowerment in urban settings. The research proposes a comparative study of three urban destinations in Europe (The Hague in the Netherlands, San Sebastian in Spain and, Ioannina in Greece) that experience similar degree of tourism growth. The proposed study will use a design-based approach in order to understand tourism decision-making and what empowers or disempowers community participation within the destinations. Based on the findings of primary and secondary data, a community empowerment model will be applied in one the destinations as a pilot for resident engagement in tourism planning. The evaluation of the pilot will allow for an optimized model to be created with implications for tourism planning at a local level that can contribute to sustainable destinations that safeguard the interests of local residents and tourists.
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).
Within TIND, Christian Roth studies the training of interactive narrative designers with the goal of developing teaching methods and learning tools for artists and designers to enable the creation of more effective artefacts. Interactive Narrative Design (IND) is a complex and challenging interdisciplinary field introducing new affordances in technique and user-experience. This requires practice-based research for further development of the educational format, demonstrating its potential while identifying and overcoming common learners’ challenges. This project aims to develop a framework for the design and evaluation of meaningful interactive narrative experiences that effectively stimulate a variety of cognitive and emotional responses such as reflection, insight, understanding, and potential behavior change. It provides tools, methods and activities to enable aspiring or practicing narrative designers through an interdisciplinary approach, including game design, immersive theatre, behavioral and cognitive psychology, and the learning sciences. HKU education means to prepare students for success in the creative industries and IND plays an important role for current and future jobs in education, arts and entertainment. IND has the potential to create an emotional impact and spark transformative change by offering agency, defined as the ability to influence narrative progression and outcomes in a meaningful way. This enables interactors to feel the weight of their own choices and their consequences, to explore different perspectives, and to more thoroughly understand complex multi-stakeholder issues, which could have significant impact on the success of emerging artistic, and learning applications. The research project is directly embedded in the curriculum of the HKU school Games & Interaction with annual educational offerings such as the Minor Interactive Narrative Design (MIND) and HKU wide broad seminars. Course evaluation and literature research will be used to create new and adjusted training for different HKU schools and the industry. Outcomes will be shared via an interactive website and events.
