Understanding the symptom experience in chronic conditions

Background: The World Health Organization defines chronic conditions as those having long duration, slow progression, and requiring some level of healthcare management across time. In 2019, on average, more than 30% of adults across Organisation for Economic Co-operation and Development countries had a chronic condition. Due to population aging, this number is projected to continuously increase and cause disability and premature death, making it an important global health concern. Chronically ill people are burdened by several symptoms, which often occur simultaneously. High symptom burden is associated with higher healthcare utilization and hospitalization rates, higher health-care costs, and lower quality of life. People with chronic conditions may improve their clinical outcomes, including symptoms, if they perform adequate self-care to maintain their health, monitor, and manage their symptoms. However, patients often find it difficult to perform self-care and, in these cases, caregivers could help. Moreover, accumulating evidence suggests that people with a chronic condition experience difficulties in perceiving their symptoms, which, in turn, is associated with distorted or exaggerated symptom burden. This might be related to illness-induced interoceptive impairments. Interoception refers to the processes through which the brain detects, elaborates, and responds to signals originating from within the body, including symptoms. In chronic conditions, some brain structures, such as the insular cortex, tend to be damaged and this leads to interoceptive alterations, which, in turn, results in symptom-processing deficits. Objectives: This PhD project aimed to a) cluster patients based on their physical and psychological symptoms and predict symptom cluster membership based on variables other than symptoms; b) assess the influence of caregiver contribution to self-care on symptom burden and the mediating role of patient self-care; c) explore the role of interoception in the symptom experience of people with a chronic condition. Methods: In the first study, we clustered 510 Italian patients with heart failure based on their symptoms. The cluster analysis was performed using two scores of the Hospital Anxiety-Depression scale and two scores of the Heart-Failure Somatic Perception Scale. ANOVA and chi-square test were used to compare patients’ characteristics among clusters. For the predictive analysis, we split the data into a training set and a test set and trained three classification models on the former to predict patients’ symptom-cluster membership based on 11 clinical/sociodemographic variables. Permutation analysis investigated which variables best predicted cluster-membership. In the second study, we performed multigroup confirmatory factor analysis to test measurement invariance, and autoregressive longitudinal path analysis with contemporaneous mediation to test the study hypotheses. In the third study, we conducted a systematic review. We searched five databases and included all primary research published between 2013-2021 in which at least one dimension of interoception was measured. Any chronic condition and any symptom were included. Only the adult population was considered. Results: In the first study we identified four clusters of HF patients based on the intensity and combination of psychological and physical symptoms: mixed distress (high psychological, low physical symptoms), high distress, low distress, moderate distress. NYHA-class and sleep quality were the most important variables in predicting symptom cluster membership. In the second study, we found that higher caregiver contribution to self-care maintenance was associated with higher patient self-care maintenance (β=0.280, p<0.001), which, in turn, was associated with lower symptom burden (β=-0.280, p<0.001). Patient self-care maintenance mediated the effect of caregiver contribution to self-care maintenance on symptom burden (β=-0.06, 95% BC bootstrapped CI: -0.13; -0.03). In the third study, we included 18 quantitative studies investigating the relationship between three interoceptive dimensions (i.e., accuracy, sensibility, awareness) and condition-specific symptoms in eight chronic conditions. We found that people with chronic conditions had lower interoceptive accuracy than healthy controls. Higher interoceptive sensibility was associated with lower symptom severity/frequency. Only one study explored interoceptive awareness. Conclusion: This PhD project offers new insights into the science of symptoms experienced by adults with a chronic condition, emphasizes the underling the role of caregivers on symptom burden, and promotes further understanding of the role of interoceptive mechanisms in symptom perception. By doing so, this PhD project can better support clinicians and researchers in identifying tailored symptom-management strategies and in investigating the effect of clusters of symptoms on patient outcomes, even when direct access to symptoms-related data is absent

Art-mapping smart-cities: accessing art collections outside the museum

PublishedArticlePaper presented at the international conference, Museums and the Web Florence (MWF2014) held in the Palazzo Vecchio in Florence, Italy 19 to 21 February 2014In this paper I will discuss the outreach potential of those mobile museum applications that relate art collections to places on a digital map and in the real world, at first focusing my attention on a specific crowd-sourcing application and on a case study that illustrates its usage, then making more general observations on the related constructivist learning experience and recommendations on how to effectively adapt it to the city of Florence’s historical context. I will start describing the affordances of the Art Maps web-based application, a research project funded by Horizon and led by researchers at the Universities of Exeter and Nottingham in collaboration with the departments of Learning, Digital and Research at Tate, London. Such application allows users to access the Tate collection through a digital map from a desktop or mobile device, and invites them to comment on an artwork and either confirm its proposed location, or suggest a new one according to their prior knowledge and experience of a place or an artwork, in a crowdsourcing exercise that aims at mapping a total of 70,000 works around the world. I will then present the Migrants Resource Centre’s case study, recounting activities run at and around Tate Britain in November 2013 by the Art Maps Research Team and aimed at a group of women recently migrated to London from non-European countries. Through the Art Maps application, participants were encouraged to use artworks from the Tate collection as landmarks, to get familiar with their area of residence and foster their orientation skills both on a digital map and in the real world, but also to tap into their knowledge and experience of the borough to interpret selected Tate artworks and precisely mark them on the map. Using a co-constructivist framework, I will then discuss the participants’ learning experience, focusing in particular on the possible changes in confidence in accessing the collection they experienced, and on the nature of the digital crowd-sourcing collaboration they embarked upon in order to exactly place Tate artworks on the map. My argument is that applications such as Art Maps constitute an effective way to flatten the perceived barrier of the museum as an elite’s stronghold, bringing collections to the more neutral territory of the places where communities dwell in. Along these lines, I will propose the idea of running similar activities in Florence and illustrate some of the many ways Art Maps can effectively intertwine the city’s cultural heritage with artworks from the Tate collection. Attendees will be invited to access the application and contribute to it with their knowledge of the city, or use it to explore its historically rich areas. In conclusion, through this paper I intend to demonstrate how the relationship between art and place, experienced through flexible digital technologies greatly enhances the quality of engagement that community groups may experience, and encourages them to visit the museum in real life

Learning the lessons from a regional industrial energy efficiency initiative

Industry accounts for 29% of UK energy use, placing energy efficiency in this sector as a fundamental to sustainable development. Given that 99% of UK industrial companies are Small and Medium Enterprises (SME) supportive initiatives in this area have the potential for significant savings and impact. This paper present a deep reflection of a local government project called “SUSTAIN Lincolnshire – Phase 2” to improve the energy efficiency of industrial SMEs within its region. A critical analysis will centre on the problems of co-ordinating and encouraging a large number of SME to become pro-active in this area. This starts with the importance of clearly defined and understood requirements, through engagement and activities with SME, to achievements attainable beyond the project. Currently, many Councils, leasing with universities, have numerous initiatives, similar in style to the project considered. The critical analysis in this paper will allow those project initiators and stakeholders to take advantage of the lessons learned when developing similar projects

Normalizing White-Collar Wrongdoing in Professional Service Firms

There is extensive literature on top managers committing wrongdoing, but few studies examine white-collar wrongdoing. Drawing on the experiences of a professional service firm, we examine why and how engineering consultants normalize wrongdoing. Leveraging bounded rationality theory, we find that organizational myopia promotes inadequate administrative systems that hold consultants prisoner to their rules and procedures, leading to normalized wrongdoing. Our theoretical contributions are threefold: (1) we contribute to the literature on wrongdoing, presenting the relation between organizational myopia and normalized wrongdoing, (2) we contribute to the administrative systems literature, showing their link with poor project performance, and (3) we show how administrative systems and normalized wrongdoing play a role in project scope creep. We introduce an iceberg model to show that the failed project (the tip of the iceberg) is due to organizational myopia and inefficient administrative systems that need to be addressed before starting any project

Humanising complex projects through design thinking and its effects

The last decades of research in project studies show us that humans, rather than technologies, software or mathematical models, shape project success. This is simultaneously fascinating and problematic since, while technologies, software or mathematical models are relatively predictable and straightforward, humans are far more complex, with extremely intricate links between motivations and emotions. This consideration is particularly true in complex projects where a plethora of diverse stakeholders have very different emotions and motivations toward the same project. To address this challenge, this essay proposes using design thinking principles, tools, and techniques to "humanise" complex projects. By bringing together stakeholders, including non-market stakeholders such as local communities, with diverse goals and interests and aligning them with a common purpose, design thinking can help to shape, plan, and deliver successful complex projects. While design thinking is commonly discussed in innovation studies, this essay aims to encourage its investigation and discussion in project studies

Project Manager and Systems Engineer: a literature rich reflection on roles and responsibilities

There are several definitions of Systems Engineering (SE) in the literature, each with different definitions of its relationship with Project Management (PM), causing a great deal of misunderstanding. The paper offers a broad and critical discussion of the relevant literature with a deep reflection concerning the historical evolution and state-of-the-art of both the definition of SE and its relationship with PM. This endeavor provides two main results: (i) a conceptual framework to define SE in a project based environment and (ii) a model to identify the best formal interaction between the Project Manager and System Engineer based on the project characteristics

Investment and risk appraisal in Energy Storage Systems: a real options approach

The increasing penetration of variable renewable energy is becoming a key challenge for the management of the electrical grid. Electrical Energy Storage Systems (ESS) are one of the most suitable solutions to increase the flexibility and resilience of the electrical system. This paper presents an innovative methodology for the appraisal of the investment in ESS. The methodology is based on the Real Option Analysis and it is able to properly consider investment risks and uncertainties as well as the options available for the investor. The paper assesses the value of the option to wait for a change in the market conditions before investing and re-evaluates the profitability of the investment after each step of the development of the ESS project. In order to exemplify relevant results, this method is applied to the UK energy market and assesses the technical and economic feasibility of investing in ESS operating price arbitrage and Short Term Operating Reserves. The results show that the implementation of the Real Option Analysis increases the economic performance of ESS. Nevertheless, ESS still requires limited incentives to be economically viable