Decompressive hemicraniectomy following malignant middle cerebral artery infarctions:a mixed methods exploration of carer experience and level of burden

Purpose: This study explores the experiences and sense of burden of family carers of survivors of malignant middle cerebral artery infarctions who had undergone decompressive hemicraniectomy. To date, there have been no studies examining carer outcomes among this unique population. This study, taken alongside an already published study of survivor outcomes, provides a more holistic picture with regard to sequelae within the sample. Method: Six family carers completed the Sense of Competence Questionnaire and the Hospital Anxiety and Depression Scale. These results were compared with existing normative data. Carers also consented to a semi-structured interview. Interview data were examined using thematic content analysis. Consistent with the mixed methods design, quantitative and qualitative findings were integrated for further analysis. Results: While carers experienced many losses, their overall sense of burden was not outside 'Average' limits, nor did they experience clinically significant symptoms of depression. All carers identified methods of coping with the demands of caregiving. These included intrapersonal, interpersonal and practical strategies. All carers apart from one were able to identify areas of post-traumatic growth. Conclusion: Carers will benefit from information, support and care. In addition, problem solving skills are essential in managing the myriad difficulties that arise in the aftermath of stroke. [Box: see text].

The lived experience of patients receiving radiotherapy for head and neck cancer: A literature review

It is estimated that 60% of patients diagnosed with head and neck cancer will receive radiotherapy at some stage in their disease trajectory. The aim of this literature review was to find and analyse papers pertaining to the lived experiences of patients with head and neck cancer receiving radiotherapy. The review identified a limited number of high-quality research papers focusing on this topic, with only 10 papers fitting the inclusion/exclusion criteria. The majority of the investigative studies were not generalisable owing to small sample sizes and many of them being conducted in only one centre. However, the findings do highlight and contribute to the understanding of the lived experiences of this patient group and provide some insight into the unique physical, social, and psychological difficulties they encounter as a result of their treatment. There appears to be a need for further high-level research into these patients, particularly focusing on the provision of support and information prior to, during, and following radiotherapy. Further attention needs to be paid to preparing patients for the slow recovery following radiotherapy. Interventional studies are also required to develop clinical guidelines and protocols that can assist health professionals in meeting the holistic needs of this patient group.

Risks to patient confidentiality when communicating health information to blind and partially sighted patients.

The research reports on a survey of 228 blind and partially sighted persons in 15 health authorities across Scotland. The survey reports data on patient experience of receiving health information in accessible reading formats. Data indicated that about 90% of blind and partially sighted persons did not receive communications from various NHS health departments in a format that they could read by themselves. The implications for patient privacy, confidentiality and wider impact on life and health care are highlighted. The implications for professional ethical medical practice and for public policy are also discussed. Recommendations for improved practice are made.

Use of maternity surveys in improving the care experience – a review of the evidence

The use of surveys and direct feedback from women as a measurement of their maternity experience is seen as a means of stimulating quality improvement. Underpinning the overall rationale behind national maternity surveys is the acknowledgement that there is a need to document women's views of maternity services to inform policymakers with a view to enhancing the delivery of quality care to women. The evidence suggests that using maternity surveys to improve maternity care experience is central to UK health policy. It is also evident that qualitative input from women has the power to highlight mismatches of experience between women and professionals. Trusts are required to look to the future and invest in qualitative methodologies, which elicit rich and detailed information on women's experiences. The aim of this literature review is to critically analyse the use of maternity surveys and their validity in improving the care experienced by users of maternity services.

A population-based study of adverse physical effects following prostate cancer treatments: Results from the PiCTure (Prostate cancer treatment – your experience) study

Background:

Men and clinicians need reliable population based information when making decisions about investigation and treatment of prostate cancer. In the absence of clearly preferred treatments, differences in outcomes become more important.

Aim:

To investigate rates of adverse physical effects among prostate cancer survivors 2-15 years post diagnosis by treatment, and estimate population burden.

Methods:

A cross sectional, postal survey to 6,559 survivors (all ages) diagnosed with primary, invasive prostate cancer (ICD10-C61), identified in Northern Ireland and the Republic of Ireland via cancer registries. Questions included symptoms at diagnosis, treatments received and adverse physical effects (impotence, urinary incontinence, bowel problems, breast changes, libido loss, hot flashes, fatigue) experienced ‘ever’ and ‘current’ i.e. at questionnaire completion. Physical effect levels were weighted by age, country and time since diagnosis for all prostate cancer survivors. Bonferroni corrections were applied to account for multiple comparisons.

Results:

Adjusted response rate 54%, (n=3,348). 75% reported at least one current physical effect (90% ever), with 29% reporting at least three. These varied by treatment. Current impotence was reported by 76% post-prostatectomy, 64% post-external beam radiotherapy with hormone therapy, with average for all survivors of 57%. Urinary incontinence (overall current level: 16%) was highest post-prostatectomy (current 28%, ever 70%). 42% of brachytherapy patients reported no current adverse physical effects; however 43% reported current impotence and 8% current incontinence. Current hot flashes (41%), breast changes (18%) and fatigue (28%) were reported more commonly by patients on hormone therapy.

Conclusions:

This study provides evidence that adverse physical effects following prostate cancer represent a significant public health burden; an estimated 1.6% of men over 45 is a prostate cancer survivor with a current adverse physical effect. This information should facilitate investigation and treatment decision-making and follow-up care of patients.

Long-term health-related quality of life of prostate cancer survivors varies by primary treatment. Results from the PiCTure (Prostate Cancer Treatment, your experience) study

PURPOSE: Men are living longer with prostate cancer. In a two-country study, we investigated the health-related quality of life (HRQoL) of prostate cancer survivors up to 18 years post-diagnosis.

METHODS: Postal questionnaires were administered in 2012 to 6559 prostate cancer (ICD10 C61) survivors 2-18 years post-diagnosis, identified through population-based cancer registries in Ireland. HRQoL was measured using QLQ-C30 and QLQ-PR25. HRQoL, functional and symptom scores were compared by primary treatment(s) using multiple linear regression.

RESULTS: Fifty-four percent responded (n = 3348). After controlling for socio-demographic and clinical factors, global HRQoL varied significantly by primary treatment (p < 0.001); compared to radical prostatectomy (RP), survivors who received androgen deprivation therapy alone (ADT; p < 0.001) or external beam radiotherapy (EBRT) without concurrent ADT (p = 0.001) had significantly lower global HRQoL. The global HRQoL of men who received brachytherapy (p = 0.157), EBRT with concurrent ADT (p = 0.940) or active surveillance/watchful waiting (p = 0.388) was not significantly different from men treated with RP. There were statistically and clinically significant differences in general (fatigue, pain, dyspnoea, appetite loss, constipation, diarrhoea, financial difficulties) and disease-specific symptoms (sexual, urinary, bowel, ADT) by primary treatment. Fatigue and insomnia scores were high for survivors in all treatment groups.

CONCLUSIONS: Prostate cancer survivors' long-term HRQoL varied with primary treatment.

IMPLICATIONS OF CANCER SURVIVORS: Population-based information regarding statistically and clinically significant treatment effects on long-term global HRQoL, symptom burden and functionality should be provided during treatment decision-making. Screening for symptoms and utilising interventions during long-term follow-up may improve survivors' HRQoL.

Testing preference formation in learning design contingent valuation (LDCV) using advanced information and repetitive treatments

Policymakers have largely replaced Single Bounded Discrete Choice (SBDC) valuation by the more statistically efficient repetitive methods; Double Bounded Discrete Choice (DBDC) and Discrete Choice Experiments (DCE) . Repetitive valuation permits classification into rational preferences: (i) a priori well-formed; (ii) consistent non-arbitrary values “discovered” through repetition and experience; (Plott, 1996; List 2003) and irrational preferences; (iii) consistent but arbitrary values as “shaped” by preceding bid level (Tufano, 2010; Ariely et al., 2003) and (iv) inconsistent and arbitrary values. Policy valuations should demonstrate behaviorally rational preferences. We outline novel methods for testing this in DBDC applied to renewable energy premiums in Chile.

Medical information extraction in European Portuguese

The electronic storage of medical patient data is becoming a daily experience in most of the practices and hospitals worldwide. However, much of the data available is in free-form text, a convenient way of expressing concepts and events, but especially challenging if one wants to perform automatic searches, summarization or statistical analysis. Information Extraction can relieve some of these problems by offering a semantically informed interpretation and abstraction of the texts. MedInX, the Medical Information eXtraction system presented in this document, is the first information extraction system developed to process textual clinical discharge records written in Portuguese. The main goal of the system is to improve access to the information locked up in unstructured text, and, consequently, the efficiency of the health care process, by allowing faster and reliable access to quality information on health, for both patient and health professionals. MedInX components are based on Natural Language Processing principles, and provide several mechanisms to read, process and utilize external resources, such as terminologies and ontologies, in the process of automatic mapping of free text reports onto a structured representation. However, the flexible and scalable architecture of the system, also allowed its application to the task of Named Entity Recognition on a shared evaluation contest focused on Portuguese general domain free-form texts. The evaluation of the system on a set of authentic hospital discharge letters indicates that the system performs with 95% F-measure, on the task of entity recognition, and 95% precision on the task of relation extraction. Example applications, demonstrating the use of MedInX capabilities in real applications in the hospital setting, are also presented in this document. These applications were designed to answer common clinical problems related with the automatic coding of diagnoses and other health-related conditions described in the documents, according to the international classification systems ICD-9-CM and ICF. The automatic review of the content and completeness of the documents is an example of another developed application, denominated MedInX Clinical Audit system.

Do challenge, task experience or computer familiarity influence the learning of historical chronology from virtual environments in 8–9 year old children?

Studies examined the potential use of Virtual Environments (VEs) in teaching historical chronology to 127 children of primary school age (8–9 years). The use of passive fly-through VEs had been found, in an earlier study, to be disadvantageous with this age group when tested for their subsequent ability to place displayed sequential events in correct chronological order. All VEs in the present studies included active challenge, previously shown to enhance learning in older participants. Primary school children in the UK (all frequent computer users) were tested using UK historical materials, but no significant effect was found between three conditions (Paper, PowerPoint and VE) with minimal pre-training. However, excellent (error free) learning occurred when children were allowed greater exploration prior to training in the VE. In Ukraine, with children having much less computer familiarity, training in a VE (depicting Ukrainian history) produced better learning compared to PowerPoint, but no better than in a Paper condition. The results confirmed the benefit of using challenge in a VE with primary age children, but only with adequate prior familiarisation with the medium. Familiarity may reduce working memory load and increase children’s spatial memory capacity for acquiring sequential temporal-spatial information from virtual displays. Keywords: timeline, chronographics

Reflections Upon the Experience of Longitudinal Research into Cultural Event Production in a Developing Destination

Longitudinal studies have the capacity to provide more nuanced explanations of tourism and event phenomena, taking account of complexity, change and context. This paper is a self-reflexive, methodological study of research practice. It investigates my experience of engaging with cultural event producers in an emerging destination over a seven-year period. Focussing on my research journey, it considers the social and relational dynamics associated with longitudinal research. Reciprocal relations and co-production of cultural events reveal nuanced information and expose fluid relationships and networks. Long-term engagement uncovers evolving practices and develops understanding of event processes embedded within their wider context.

Personalized public transportation information

Thesis to obtain the Master of Science Degree in Computer Science and Engineering

Bits, Atoms, and Information Sharing: new opportunities for participation

The particular characteristics and affordances of technologies play a significant role in human experience by defining the realm of possibilities available to individuals and societies. Some technological configurations, such as the Internet, facilitate peer-to-peer communication and participatory behaviors. Others, like television broadcasting, tend to encourage centralization of creative processes and unidirectional communication. In other instances still, the affordances of technologies can be further constrained by social practices. That is the case, for example, of radio which, although technically allowing peer-to-peer communication, has effectively been converted into a broadcast medium through the legislation of the airwaves. How technologies acquire particular properties, meanings and uses, and who is involved in those decisions are the broader questions explored here. Although a long line of thought maintains that technologies evolve according to the logic of scientific rationality, recent studies demonstrated that technologies are, in fact, primarily shaped by social forces in specific historical contexts. In this view, adopted here, there is no one best way to design a technological artifact or system; the selection between alternative designs—which determine the affordances of each technology—is made by social actors according to their particular values, assumptions and goals. Thus, the arrangement of technical elements in any technological artifact is configured to conform to the views and interests of those involved in its development. Understanding how technologies assume particular shapes, who is involved in these decisions and how, in turn, they propitiate particular behaviors and modes of organization but not others, requires understanding the contexts in which they are developed. It is argued here that, throughout the last century, two distinct approaches to the development and dissemination of technologies have coexisted. In each of these models, based on fundamentally different ethoi, technologies are developed through different processes and by different participants—and therefore tend to assume different shapes and offer different possibilities. In the first of these approaches, the dominant model in Western societies, technologies are typically developed by firms, manufactured in large factories, and subsequently disseminated to the rest of the population for consumption. In this centralized model, the role of users is limited to selecting from the alternatives presented by professional producers. Thus, according to this approach, the technologies that are now so deeply woven into human experience, are primarily shaped by a relatively small number of producers. In recent years, however, a group of three interconnected interest groups—the makers, hackerspaces, and open source hardware communities—have increasingly challenged this dominant model by enacting an alternative approach in which technologies are both individually transformed and collectively shaped. Through a in-depth analysis of these phenomena, their practices and ethos, it is argued here that the distributed approach practiced by these communities offers a practical path towards a democratization of the technosphere by: 1) demystifying technologies, 2) providing the public with the tools and knowledge necessary to understand and shape technologies, and 3) encouraging citizen participation in the development of technologies.

The role of information systems in business process redesign : a case of Turkish electricity market

This study is specifically concerned with the effect of the Enterprise Resource Planning (ERP) on the Business Process Redesign (BPR). Researcher’s experience and the investigation on previous researches imply that BPR and ERP are deeply related to each other and a study to found the mentioned relation further is necessary. In order to elaborate the hypothesis, a case study, in particular Turkish electricity distribution market and the phase of privatization are investigated. Eight companies that have taken part in privatization process and executed BPR serve as cases in this study. During the research, the cases are evaluated through critical success factors on both BPR and ERP. It was seen that combining the ERP Solution features with business processes lead the companies to be successful in ERP and BPR implementation. When the companies’ success and efficiency were compared before and after the ERP implementation, a considerable change was observed in organizational structure. It was spotted that the team composition is important in the success of ERP projects. Additionally, when the ERP is in driver or enabler role, the companies can be considered successful. On the contrary, when the ERP has a neutral role of business processes, the project fails. In conclusion, it can be said that the companies, which have implemented the ERP successfully, have accomplished the goals of the BPR.

The Swiss registry for pulmonary arterial hypertension: the paediatric experience.

Pulmonary arterial hypertension is a rare disease with a poor prognosis. Epidemiological data are scarce, particularly in the paediatric population. A registry was recently developed in order to collect epidemiological data on patients with pulmonary arterial hypertension (PAH) in Switzerland. This is the first description of the paediatric data. Paediatric patients aged 0-18 years with the diagnosis of PAH were enrolled in the registry from 1999 to 2005 with informed consent from their parents. Patient characteristics, PAH aetiology, functional capacity, exercise capacity, treatments and outcome were among the most important data collected. A total of 23 patients (12 male, 11 female) have been thus far included in the registry. Median age at time of diagnosis was 3 years (range 1 month-18 years) and median follow-up was 3.47 years (range 1 day-12.6 years). PAH aetiologies are diagnosed as idiopathic in 8/23 patients (34.8%) and associated with congenital heart diseases in 12/23 (52.2%) or with pulmonary diseases in 3/23 patients (13.0%). Death occurred in 1 patient before treatment was initiated. Single treatments include medications with a calcium channel blocker in 2/23 patients, with bosentan in 10/23, and with inhaled iloprost in 1/23. Combined therapies include bosentan and inhaled iloprost in 7/23 patients, bosentan and sildenafil in 2/23 patients, and bosentan, sildenafil and inhaled iloprost in 2/23 patients. Additional oral anticoagulation is given to 14/23 patients and 8/23 patients are on oxygen therapy. NYHA class at baseline visit was obtained in 22/23 patients (4 NYHA 2, 17 NYHA 3 and 1 NYHA 4). Changes in NYHA class were observed over a 2-year period in 3/22 patients who improved from NYHA 3 to NYHA 2. Initial improvement of 6-minute walk distance was observed in 6/13 patients with a sustained improvement in 4. These preliminary results provide information on the epidemiology of PAH in children in Switzerland and demonstrate that most paediatric patients show stabilisation of the disease under new treatments. This underscores the utility of registries for rare diseases in providing crucial information in the era of new therapies. It may also help to improve the future medical approach.

Expanding to institutionally different countries. Reasons, Firm International Experience, and Entry Mode Choice

We examine entry mode choice and its consequences when a multinational enterprise (MNE) expands into an institutionally different country. We argue that discussions of entry mode should distinguish between informal (e.g., culture) and formal (e.g., laws) institutions, and should take into account not just the home country of the MNE and its distance to the focal host country, but the MNE's overall footprint and experience across the world in general, especially in countries with an institutional structure that is similar to that of the focal host country. Specifically, we argue that firms with experience in countries with different informal institutions will be more likely to enter via acquisitions than firms without such experience, that such experience will not matter as much in the case of formal institutions, and that such firms will exit more quickly when they enter via equity alliances than through full acquisitions. We also distinguish between balanced and unbalanced alliances and argue that balanced alliances will be more enduring, but only when the host country is culturally (not legally) different from the other countries where the MNE has experience. Our arguments suggest that entry mode should be conditioned on a firm's experience in other markets, and that intercountry differences in formal versus informal institutions have distinct influences on entry mode.