Adulthood with Turner Syndrome: Quality of life, psychosocial adjustment and clinical management in 70 Italian women

Abstract Background: Turner syndrome (TS) is a chromosomal abnormality (total or partial absence of one of the sexual chromosomes in some or all cells of the body), which affects approximately 1:2000 female. Principal characteristics are short stature and gonadal disgenesis. Clinical management consist of Growth Hormone (GH) treatment and oestrogen replacement therapy (HRT), to induce development of secondary characteristics and to avoid the sequelae of oestrogen deficiency. Aim of the study: To assess clinical management, quality of life (QoL) and general psychosocial adjustment of women with TS. Population: 70 adult Caucasian females with TS (mean age: 27.8, ± 7.6; range 18-48 y.). Setting: Specialist service for Rare Disease care, University Hospital. Methods: Subjects were required to fill in questionnaires collecting ASR, WHOQOL, and 8 open questions. Data were compared with those of the Italian population or to those collected in a comparison group (70 healthy females, mean age: 27.9, ±7.3, range 21-48 y.). Results: Women with TS are educated as well as the Italian Population, but they have a less successful professional life. They show good QoL in general, but they appeared less satisfied in social area. They had statistically higher scores than the comparison group for depression, anxiety and withdrawal. Are less involved in a love relationship. Diagnosis communication was mostly performed by doctors or parents, satisfaction was higher when information was given by parents. Main preoccupation about TS are infertility, feeling of being different and future health problem. Conclusions: Italian people with TS were generally well adapted and have a good QoL, but lived more often with parents and show impaired sentimental and sexual life. They have higher degree of psychological distress compared to a comparison group. Psychological intervention should firstly address parents in order to encourage an open communication on diagnosis issues and on sexual education.

Six and 12 months' effects of individual joint protection education in people with rheumatoid arthritis: A randomized controlled trial

Joint protection (JP) education for people with rheumatoid arthritis (RA) is effective when applying psycho-educational teaching strategies. The Pictorial Representation of Illness and Self Measure (PRISM) was used to identify relevant JP education goals and life aspects, both supporting motivation and behaviour change. The objective of this study was to compare the effects of individual JP education, PRISM-based (PRISM-JP) vs. conventional (C-JP), in people with rheumatoid arthritis (RA).

Applied Developmental Psychology as an Implementation of the Life-Span View of Human Development

Application of knowledge about psychological development should, ideally, be theory based. As such, these applications represent “natural ontogenetic experiments”; the results of the evaluation of such interventions feed back to the theory, helping to support, falsify, or refine the ideas from the theory which led to the particular application. Such applied developmental intervention research is central within a currently popular perspective of life-span human development. Thus, applied developmental intervention research provides critical tests of such key concepts within this life-span perspective as: plasticity; multidirectionality; the synthesis of continuous and discontinuous processes across ontogeny; contextual embeddedness; and the role of individuals as agents in their own development. This paper elucidates some of the major features of the dynamic linkage between applied developmental psychology and this view of life-span human development. Key elements of this life-span perspective and the facts of developmental intervention, as seen from this perspective, are specified. Finally, the doctoral training program at the authors' institution is presented as one example of how this link may be institutionalized in the form of graduate education.

Modes of Diversification in Bulgarian Higher Education: Case Studies in four Disciplines

This project was stimulated by the unprecedented speed and scope of changes in Bulgarian higher education since 1989. The rapid growth of the student population and the emergence of a new private sector in higher education led to tightening governmental control and a growing criticism of autonomy and academic freedom. This raised questions about the need for diversification in the field, about the importance of recent innovations in terms of strategic choices for future development and so of how higher education governance could maintain diversity without the system deteriorating. The group first traced the extent of spontaneous processes of innovation at the level of content, of institutions, and the organisation of teaching and learning processes. They then identified the different parties in the struggle for institutionalisation and against diversification, and promising mechanisms for maintaining diversity in higher education. On this basis they outlined a basis for a wide-ranging public discussion of the issue which may serve as a corrective to the mechanisms of state control. Their work included analysis of the legislative framework laid down in the Higher Education Act, which effectively dispenses with the autonomy of universities. They then surveyed the views of both high-level executives in the field and the academics actually involved in the process, as well as of the "consumers" of the educational product, i.e. the students. In considering diversification, they focused on four different types of programmes, including those where diversification is largely limited to content level (e.g. Law), those where it operates mainly on structural levels (e.g. Industrial Management), those where it is often feigned (e.g. Social Work), and those where it is at best formal and sporadic (e.g. Mechanical Engineering). They conclude that the educational system in Bulgaria has considerable internal resources for development. The greatest need is for adequate statutory regulation of academic life which will provide incentives for responsible academic development of higher education institutions and create conditions for the institutionalisation of academic self-organisation and self-control, which will in turn limit the pathological trends in the diversification processes.

Academic Intelligence is not Enough! WICS: An Expanded Model for Effective Practice in School and in Later Life

Is there a psychological basis for teaching and learning in the context of a liberal education, and if so, what might such a psychological basis look like? Traditional teaching and assessment often emphasize remembering facts and, to some extent, analyzing ideas. Such skills are important, but they leave out of the aspects of thinking that are most important not only in liberal education, but in life, in general. In this article, I propose a theory called WICS, which is an acronym for wisdom, intelligence, and creativity, synthesized. The basic idea underlying this theory is that, through liberal education, students need to acquire creative skills and attitudes to generate new ideas about how to adapt flexibly to a rapidly changing world, analytical skills and attitudes to ascertain whether these new ideas are good ones, practical skills and attitudes to implement the new ideas and convince others of their value, and wisdom-based skills and attitudes in order to ensure that the new ideas help to achieve a common good through the infusion of positive ethical values.

Quality of life and coping behaviour in Type 1 diabetes mellitus: relationship with metabolic control

Uncovering factors possibly leading to insufficient metabolic control in Type 1 diabetes, both on the part of the patient or the treating physician, is of considerable relevance. The present long-term study investigated the relevance of patient-related vs education-related factors for the success in achieving acceptable glycaemic control. Adolescents or young adults with Type 1 diabetes mellitus (n= 26, mean age= 22+/-2 yr, diabetes duration= 11+/-5 yr) were followed during 36+/-5 months. All patients were treated by the same diabetologist. At the beginning of the study coping behaviour, quality of life and evaluation of emotional status were assessed. Changes in HbA1c were used as a parameter of glycaemic control. At follow-up there was a significant decrease in HbA1c of 0.4% (p<0.01). However, this was not in statistically significant correlation with age, gender, aspects of quality of life or coping behaviour. Therefore, glycaemic control and/or improvement of glycaemic control in adolescents or young adults with Type 1 diabetes mellitus seems to be primarily related to other factors, eg continuous education provided in a stable setting.

Effects of a comprehensive rehabilitation program on quality of life in patients with chronic heart failure

This evaluation was performed to assess the effects of a new, comprehensive outpatient rehabilitation program on generic and disease-specific quality of life related to exercise tolerance in stable chronic heart failure patients. Fifty-one patients (aged 59+/-11 years; 84% men) were treated for 12 weeks. Patients underwent optimized drug treatment, exercise training, and counseling and education. At baseline and at the end of the program, functional status, exercise capacity, and quality of life were assessed using the Medical Outcomes Study 36-item Short-Form Health Survey and the Minnesota Living with Heart Failure Questionnaire. Left ventricular ejection fraction and New York Heart Association functional class, as well as measures of physical fitness and walking distance covered in 6 minutes, improved significantly (by 11%-20% and by 58% on average, respectively). Physical functioning (effect size, 0.38; p<0.0001), role functioning (effect size, 0.17; p<0.05), and mental component score (effect size, 0.47; p<0.0001) on the questionnaire improved significantly. Disease-specific quality of life improved in sum score (effect size, 0.24; p<0.0001) and physical component score (effect size, 0.35; p<0.0001). The latter was inversely correlated to improvement in peak power output (r= -0.31; p<0.05). In patients with stable chronic heart failure, significant improvements in both generic and disease-specific quality of life related to improved exercise tolerance can be achieved within 12 weeks of comprehensive rehabilitation.

Life cycle assessment of trayless dining

Universities in the United States are applying more sustainable approaches to their dining service operations. "The increase in social consciousness and environmental stewardship on college campuses has spurred an array of new and innovative sustainability programs"(ARAMARK Higher Education 2008). University residence dining is typically cafeteria style, with students using trays to carry food. Studies report that food served without trays substantially reduces food waste and water and electrical consumption associated with washing trays. Commonly, these reported results are estimates and not measurements taken under actual operating conditions. This study utilizes measurements recorded under actual dining service conditions in student residence halls at Michigan Technological University to develop the following: 1) operational-specific data on the issues and potential savings associated with a conversion to trayless dining and 2) life cycle assessment (LCA) cost and environmental impact analyses comparing dining with and without trays. For the LCA, the entire life cycle of the system is considered, from the manufacturing to the usage and disposal phases. The study shows that trayless dining reduces food waste because diners carry less food. The total savings for the diner shifts when not using trays for the standard academic year (205 days), with an average number of 700 diners, is 7,032 pounds of food waste from the pre-rinse area (33% reduction) and 3,157 pounds of food waste from the pan washing area (39% reduction). In addition, for each day of the study, the diners consumed more food during the trayless portion of the experiment. One possible explanation for the increased food consumption during this short duration study could be that the diners found it more convenient to eat the extra food on their plate rather than carrying it back for disposal. The trayless dining experiment shows a reduction in dishwasher water, steam, and electrical consumption for each day of the study. The average reduction of dishwasher water, steam, and electrical consumption over the duration of the study were 10.7%, 9.5%, and 6.4% respectively. Trayless dining implementation would result in a decrease of 4,305 gallons of consumption and wastewater discharge, 2.87 mm BTU of steam consumption, and 158 kWh of electrical consumption for the dinner shift over the academic year. Results of the LCA indicate a total savings of $190.4 when trays are not used during the dinner shift. Trayless dining requires zero CO2 eq and cumulative energy demand in the manufacturing stage, reductions of 1005 kg CO2 eq and 861 MJ eq in the usage phase, and reductions of 6458 kg CO2 eq and 1821 MJ eq in the end of the life cycle.

Teaching and assessment of implant dentistry in undergraduate and postgraduate education: a European consensus

This paper constitutes a summary of the consensus documents agreed at the First European Workshop on Implant Dentistry University Education held in Prague on 19-22 June 2008. Implant dentistry is becoming increasingly important treatment alternative for the restoration of missing teeth, as patients expectations and demands increase. Furthermore, implant related complications such as peri-implantitis are presenting more frequently in the dental surgery. This consensus paper recommends that implant dentistry should be an integral part of the undergraduate curriculum. Whilst few schools will achieve student competence in the surgical placement of implants this should not preclude the inclusion of the fundamental principles of implant dentistry in the undergraduate curriculum such as the evidence base for their use, indications and contraindications and treatment of the complications that may arise. The consensus paper sets out the rationale for the introduction of implant dentistry in the dental curriculum and the knowledge base for an undergraduate programme in the subject. It lists the competencies that might be sought without expectations of surgical placement of implants at this stage and the assessment methods that might be employed. The paper also addresses the competencies and educational pathways for postgraduate education in implant dentistry.

Education and Ideologies of the Knowledge Economy: Europe and the Politics of Emulation

The Austrian philosopher Ludwig Wittgenstein famously proposed a style of philosophy that was directed against certain pictures [bild] that tacitly direct our language and forms of life. His aim was to show the fly the way out of the fly bottle and to fight against the bewitchment of our intelligence by means of language: “A picture held us captive. And we could not get outside it, for it lay in our language and language seemed to repeat it to us inexorably” (Wittgenstein 1953, 115). In this context Wittgenstein is talking of philosophical pictures, deep metaphors that have structured our language but he does also use the term picture in other contexts (see Owen 2003, 83). I want to appeal to Wittgenstein in my use of the term ideology to refer to the way in which powerful underlying metaphors in neoclassical economics have a strong rhetorical and constitutive force at the level of public policy. Indeed, I am specifically speaking of the notion of ‘the performative’ in Wittgenstein and Austin. The notion of the knowledge economy has a prehistory in Hayek (1937; 1945) who founded the economics of knowledge in the 1930s, in Machlup (1962; 1970), who mapped the emerging employment shift to the US service economy in the early 1960s, and to sociologists Bell (1973) and Touraine (1974) who began to tease out the consequences of these changes for social structure in the post-industrial society in the early 1970s. The term has been taken up since by economists, sociologists, futurists and policy experts recently to explain the transition to the so-called ‘new economy’. It is not just a matter of noting these discursive strands in the genealogy of the ‘knowledge economy’ and related or cognate terms. We can also make a number of observations on the basis of this brief analysis. First, there has been a succession of terms like ‘postindustrial economy’, ‘information economy’, ‘knowledge economy’, ‘learning economy’, each with a set of related concepts emphasising its social, political, management or educational aspects. Often these literatures are not cross-threading and tend to focus on only one aspect of phenomena leading to classic dichotomies such as that between economy and society, knowledge and information. Second, these terms and their family concepts are discursive, historical and ideological products in the sense that they create their own meanings and often lead to constitutive effects at the level of policy. Third, while there is some empirical evidence to support claims concerning these terms, at the level of public policy these claims are empirically underdetermined and contain an integrating, visionary or futures component, which necessarily remains untested and is, perhaps, in principle untestable.

The Development of Social Work as a Speciality and the Profession in Estonia

For Estonia and its people social work is one of the vitally important fields that had to be built up from almost nothing since independence was regained in 1991. During Soviet times social work and social workers did not receive the necessary attention. Severe social problems were denied and kept hidden since according to official communist ideology, life in the Soviet Union was the best in the world and getting better all the time. Social workers did not receive specialised education and their functions were to be carried out by the workers of trade unions and the party, by teachers and by the workers of the personnel departments. In the 1990s big changes, having also an effect on social life, took place in the development of Estonian society. Concepts such as social work and social worker were rediscovered in Estonia. There are certain prerequisites for the success of any activity (including social work). One of the most important ones is being a professional, a worker with thorough preparation. Social work as an occupation requires specialised academic education, which is based on theoretical knowledge and practical skills that have been acquired through theoretical knowledge. Specialised knowledge is a foundation for attaining a specialised qualification. However, at the same time one has to keep in mind that social work as an occupation is constantly changing, there is no absolute knowledge - everything is relative, dynamic and changing (Tamm, 1998). The changing nature of the activity requires reflection by a social worker, who also has to be able to evaluate his/her work and its basis and learn from experiences. Academic specialised education implies also the development of a new professional identity and higher levels of competence. This underlines the necessity of specialised education.

Differences in Internet Usage - Social Inequality and Informal Education

In the public debate the internet is regarded as a central resource for knowledge and information. Associated with this is the idea that everyone is able and even expected to serve himself or herself according to his or her own needs via this medium. Since more and more services are also delivered online the internet seems to allow its users to enjoy specific advantages in dealing with their everyday life. However, using the internet is based on a range of preconditions. New results of empirical and theoretical research indicate the rise of a social divide in this context. Within the internet, different ways of use can be identified alongside social inequalities. Boundaries of the "real life" are mirrored in the virtual space e.g. in terms of forms of communification and spaces for appropriation. These are not only shaped by invidual preferences but particularly by social structures and processes. In the context of the broader debate on education it is stated that formal educational structures are to be completed by arrangements which are structured in informal respectively nonformal ways. Particularly the internet is suggested to play an important role in this respect. However, the phenomenon of digital inequality points to limitations consolidated by effects of economic, social, and cultural ressources: Economical resources affect opportunities of access, priorities of everyday life shape respective intentions of internet use, social relationships have an impact on the support structures available and ways of appropriation reproduce a specific understanding of informal education ("informelle Bildung"). This produces an early stratification of opportunities especially for the subsequent generation and may lead to extensive inequalities regarding the distribution of advantages in terms of education. Thus the capacity of the virtual space in terms of participatory opportunities and democratic potentials raises concerns of major relevance with respect to social and educational policy. From the perspective of different disciplines involved in these issues it is essential to clarify this question in an empirical as well as in a theoretical way and to make it utilizable for a future-orientied practice. This article discusses central questions regarding young people's internet use and its implications for informal education and social service delivery on the basis of empirical findings. It introduces a methodological approach for this particular perspective and illustrates that the phenomena of digital divide and digital inequality are as much created by social processes as by technical issues.

Capabilities and Education

This paper provides an outline about the basic ideas of the capability approach. It will be argued that the capability approach is able to provide an appropriate approach in order to evaluate educational and social human services. As an egalitarian approach to social justice, the capability approach has particular strengths when issues concerning the actual life-conduct of tangible human beings come to the fore. In particular educational aspects of welfare and well-being might thus be well grounded on the Aristotelian reasoning of the capability approach. The paper focuses on the potentially fruitful relations of the capability approach and the philosophy and practice of ‘just’ education referring to the idea of the autonomy of life-practice.