Issues of cause and control in patient accounts of Type 2 diabetes

Patients experience considerable difficulties in making and sustaining health-related lifestyle changes. Many Type 2 diabetes patients struggle to follow disease risk-management advice even when they receive extensive information and support. Drawing on a qualitative study of patients with Type 2 diabetes, the paper uses discourse analysis to examine their accounts about disease causation and disease management, and the implications for how they respond to their condition and health services advice. As it is a multifactorial disease, biomedical discourse around Type 2 diabetes is complex. Patients are encouraged to grasp the complicated message that both cause and medical outcomes related to their condition are partly, but not wholly, within their control. Discursive constructions identified from respondent accounts indicate how these two messages are deployed variously by respondents when accounting for disease causation and management. While these constructions (identified in respondent accounts as 'Up to me' and 'Down to them') are a valuable resource for patients, equally they may be deployed in a selective and detrimental way. We conclude that clear messages from health professionals about effective disease management may help patients to position themselves more effectively in relation to their condition. More importantly, they might serve to hinder the availability of inappropriate and potentially harmful patient positions where patients either relinquish responsibility for disease management or reject all input from health professionals. © The Author 2005. Published by Oxford University Press. All rights reserved.

Anti-VEGF treatment of patients with diabetic macular edema : Studies of visual acuity, macular edema and patient-reported outcomes

The aim of this thesis was to describe and evaluate visual acuity, macular edema and patientreported outcomes (PRO) following anti-VEGF treatment of diabetic macular edema (DME) patients in a real-world setting. Using a longitudinal study design, a cohort of DME patients was followed from baseline to 1 year after treatment start. Data were collected from two eye clinics at two county hospitals. Social background characteristics, medical data and PRO were measured before treatment initiation, at four month and after 1 year. A total of 57 patients completed the study. Mean age was 69 years and the sample was equally distributed regarding sex. At baseline, the patients described their general health as low. One year after treatment initiation, 30 patients had improved visual acuity and 27 patients had no improvement in visual acuity. The patients whose visual acuity improved reported an improvement in several subscales in patient-reported outcome measures (PROM), which was in contrast to the group that experienced a decline in visual acuity, where there was no improvement in PROM. Outcomes from the study can be useful for developing and providing relevant information and support to patients undergoing this treatment.

Long-term antidepressant use: patient perspectives of benefits and adverse effects

Long-term antidepressant treatment has increased and there is evidence of adverse effects; however, little is known about patients’ experiences and views of this form of treatment.This study used mixed methods to examine patients’ views and experiences of long-term antidepressant treatment, including benefits and concerns. Data from 180 patients, who were long-term users of antidepressants (3–15 years), were extracted from an anonymous online survey of patients’ experiences of antidepressants in New Zealand. Participants had completed rating scales about the effectiveness of antidepressants, levels of depression before and during antidepressant use, quality of life, and perceived adverse effects. Two open-ended questions allowed participants to comment on personal experiences. The majority (89.4%) reported that antidepressants had improved their depression although 30% reported moderate-to-severe depression on antidepressants. Common adverse effects included withdrawal effects (73.5%), sexual problems (71.8%), and weight gain (65.3%). Adverse emotional effects, such as feeling emotionally numb (64.5%) and addicted (43%), were also common. While the majority of patients were pleased with the benefits of antidepressant treatment, many were concerned about these adverse effects. Some expressed a need for more information about long-term risks and increased information and support to discontinue.

Information and wildlife valuation: Experiments and policy

The authors use experimental surveys to investigate the association between individuals' knowledge of particular wildlife species and their stated willingness to allocate funds to conserve each. The nature of variations in these allocations between species (e.g., their dispersion) as participants' knowledge increases is examined. Factors influencing these changes are suggested. Willingness-to-pay allocations are found not to measure the economic value of species, but are shown to be policy relevant. The results indicate that poorly known species, e.g., in remote areas, may obtain relatively less conservation support than they deserve.

The public's knowledge of and support for conservation of Australia's Tree-Kangaroos

After providing some brief background on Dendrolagus species in Australia, two consecutive surveys of Brisbane’s residents are used to assess public knowledge of tree-kangaroos and the stated degree of support for their conservation in Australia. The responses of participants in Survey I are based on their pre-survey knowledge of wildlife. The same additional set of participants completed Survey II after being provided with information on all the wildlife species mentioned in Survey I. Changes in the attitudes of respondents and their degree of support for the protection and conservation of Australia’s tree-kangaroos are measured, including changes in their contingent valuations and stated willingness to provide financial support for such conservation. Reasons for wanting to protect tree-kangaroos are specified and analyzed. Furthermore, changes that occur in the relative importance of these reasons with increased knowledge are also examined. Support for the conservation of tree-kangaroos is found to increase with the additional knowledge supplied. Furthermore, support for the conservation of Australia’s less well-known tropical mammals is shown to increase relative to better known mammals (icons) present in temperate areas, such as koalas and red kangaroos with this increased knowledge. Possible implications of the results for government conservation policies in Australia are examined.

Solar Intensity Forecasting using Artificial Neural Networks and Support Vector Machines

This paper presents several forecasting methodologies based on the application of Artificial Neural Networks (ANN) and Support Vector Machines (SVM), directed to the prediction of the solar radiance intensity. The methodologies differ from each other by using different information in the training of the methods, i.e, different environmental complementary fields such as the wind speed, temperature, and humidity. Additionally, different ways of considering the data series information have been considered. Sensitivity testing has been performed on all methodologies in order to achieve the best parameterizations for the proposed approaches. Results show that the SVM approach using the exponential Radial Basis Function (eRBF) is capable of achieving the best forecasting results, and in half execution time of the ANN based approaches.

Response to the Health Information and Quality Authority on their Corporate Plan

The Institute of Public Health in Ireland is an all-island body which aims to improve health in Ireland, by working to combat health inequalities and influence public policies in favour of health. The Institute promotes co-operation in research, training, information and policy in order to contribute to policies which tackle inequalities in health. He Institute houses the all-Ireland population health observatory, INIsPHO. The Institute has enjoyed good working relations with HIQA and welcomes the opportunity to submit its views for inclusion in HIQA’s forthcoming Corporate Plan. Our response highlights the inter-relatedness of the four Functions of HIQA. The Institute believes that HIQA’s first Corporate Plan should aim to develop all four Functions in a co-ordinated manner that recognizes and takes advantage of their inter-dependence. For example; the Health Information Function should include a strong focus on, but not be limited to, information requirements to support the delivery of the other three Functions. As well as gathering relevant information in a complementary way, these other Functions can help define priorities for the Health Information Function. This approach will have implications for the organizational structures and processes within HIQA, and the way it conducts its business.

Code of Practice on Confidentiality of Patient Information (PDF 108 KB)

Code of Practice on Confidentiality of Patient Information

Consent - Patient Information Leaflet- Consent - it's up to you (PDF 15 KB)

Consent - Patient Information Leaflet- Consent - it's up to you

Information and Communications: ICT Strategy Vision Statement (PDF 323KB)

The Vision for ICT to Support Health and Social Care Services

A Step in the Right Direction: An Evaluation of the Fáiltiú Information and Advise Service

The Fáiltiú service provides information and advice on rights, entitlements and options to homeless people, or those at risk of homelessness. The objectives of this evaluation were to assess the information needs of users of the service, how effectively they were being met, and how they could be improved. Two focus groups of staff members and service users gave their views on the design and implementation of the research at the outset of the project. A screening questionnaire identified 78 people who used the Fáiltiú service in a specified time period, of whom 40 participated in the evaluation by giving their views on the service. The study reviewed the literature on homelessness, attempted to define the term, and examined the characteristics of homeless people and relevant Irish social policy. The conclusions reached were: users of the Fáiltiú service are marginalized in a number of ways and share characteristics related to poverty and social exclusion, such as poor educational qualifications, high levels of unemployment and experience of prison; their needs are multi-dimensional and include accommodation, financial, social and medical support, and access to employment and training services: the service needs to respond to these needs in a holistic way.This resource was contributed by The National Documentation Centre on Drug Use.

Investing Effectively in Information and Communication Technology in Schools, 2008-2013

Learning is changing. A pivotal force in bringing about this change is the use of information and communications technology (ICT) which provides richer, more immediate, world-relevant educational resources and opportunities. When used well, ICT enriches learning and enhances teaching. It invigorates classroom activities and is a powerful motivational tool that encourages learners to progress in more personalised and self-directed ways. Ireland has achieved rapid change and growth in the past decade, but to sustain this we must prepare the next generation for the knowledge society in which they will live. The challenge we face is to ensure that the emphasis on ICT in schools shifts, in the immediate future, from technology provision to a focus on its deliberate use by the learner. Fostering personal creativity has always been a desirable educational value. The pursuit of creativity and inventiveness are now pivotal skills in a knowledge economy and the embedding of ICT in learning can greatly facilitate their development. Web 2.0 will facilitate greater interactivity and enable greater levels of user-generated content. It is crucial that young people acquire the ICT and related skills to support these new opportunities.

Carbapenemase Producing Enterobacteriaceae/Carbapenemase Producing Organism (CPE/CPO) Patient Information leaflet

Information for patients and visitors on�Carbapenemase Producing Enterobacteriaceae/Carbapenemase Producing Organism (CPE/CPO)

The impact of information on decision-making in palliative care

Résumé Ce travail vise à clarifier les résultats contradictoires de la littérature concernant les besoins des patients d'être informés et de participer à la prise de décision. La littérature insiste sur le contenu de l'information comme base de la prise de décision, bien qu'il existe des preuves que d'autres contenus sont importants pour les patients. La thèse essaie en outre d'identifier des possibilités de mieux répondre aux préférences d'information et de participation des patients. Les travaux ont porté en particulier sur les soins palliatifs. Une analyse de la littérature donne un aperçu sur les soins palliatifs, sur l'information des patients et sur leur participation à la prise de décisions thérapeutiques. Cette analyse résume les résultats d'études précédentes et propose un: modèle théorique d'information, de prise de décision et de relation entre ces deux domaines. Dans le cadre de ce travail, deux études empiriques ont utilisé des questionnaires écrits adressés à des personnes privées et à des professionnels de la santé, couvrant la Suisse et le Royaume Uni, pour identifier d'éventuelles différences entre ces deux pays. Les enquêtes ont été focalisées sur des patients souffrant de cancer du poumon. Les instruments utilisés pour ces études proviennent de la littérature afin de les rendre comparables. Le taux de réponse aux questionnaires était de 30-40%. La majorité des participants aux enquêtes estime que les patients devraient: - collaborer à la prise de décision quant à leur traitement - recevoir autant d'information que possible, positive aussi bien que négative - recevoir toutes les informations mentionnées dans le questionnaire (concernant la maladie, le diagnostic et les traitements), tenant compte de la diversité des priorités des patients - être soutenus par des professionnels de la santé, leur famille, leurs amis et/ou les personnes souffrant de la même maladie En plus, les participants aux enquêtes ont identifié divers contenus de l'information aux patients souffrant d'une maladie grave. Ces contenus comprennent entre autres: - L'aide à la prise de décision concernant le traitement - la possibilité de maintenir le contrôle de la situation - la construction d'une relation entre le patient et le soignant - l'encouragement à faire des projets d'avenir - l'influence de l'état émotionnel - l'aide à la compréhension de la maladie et de son impact - les sources potentielles d'états confusionnels et d'états anxieux La plupart des contenus proposés sont positifs. Les résultats suggèrent la coexistence possible de différents contenus à un moment donné ainsi que leur changement au cours du temps. Un modèle est ensuite développé et commenté pour présenter le diagnostic d'une maladie grave. Ce modèle est basé sur la littérature et intègre les résultats des études empiriques réalisées dans le cadre de ce travail. Ce travail analyse également les sources préférées d'information et de soutien, facteurs qui peuvent influencer ou faire obstacle aux préférences d'information et de participation. Les deux groupes de participants considèrent les médecins spécialistes comme la meilleure source d'information. En ce qui concerne le soutien, les points de vue divergent entre les personnes privées et les professionnels de la santé: généralement, les rôles de soutien semblent peu définis parmi les professionnels. Les barrières à l'information adéquate du patient apparaissent fréquemment liées aux caractéristiques des professionnels et aux problèmes d'organisation. Des progrès dans ce domaine contribueraient à améliorer les soins fournis aux patients. Finalement, les limites des études empiriques sont discutées. Celles-ci comprennent, entre autres, la représentativité restreinte des participants et les objections de certains groupes de participants à quelques détails des questionnaires. Summary The present thesis follows a call from the current body of literature to better understand patient needs for information and for participation in decision-making, as previous research findings had been contradictory. Information so far seems to have been considered essentially as a means to making treatment decisions, despite certain evidence that it may have a number of other values to patients. Furthermore, the thesis aims to identify ways to optimise meeting patient preferences for information and participation in treatment decisions. The current field of interest is palliative care. An extensive literature review depicts the background of current concepts of palliative care, patient information and patient involvement into treatment decisions. It also draws together results from previous studies and develops a theoretical model of information, decision-making, and the relationship between them. This is followed by two empirical studies collecting data from members of the general public and health care professionals by means of postal questionnaires. The professional study covers both Switzerland and the United Kingdom in order to identify possible differences between countries. Both studies focus on newly diagnosed lung cancer patients. The instruments used were taken from the literature to make them comparable. The response rate in both surveys was 30-40%, as expected -sufficient to allow stastical tests to be performed. A third study, addressed to lung cancer patients themselves, turned out to require too much time within the frame available. A majority of both study populations thought that patients should: - have a collaborative role in treatment-related decision-making -receive as much information as possible, good or bad - receive all types of information mentioned in the questionnaire (about illness, tests, and treatment), although priorities varied across the study populations - be supported by health professionals, family members, friends and/or others with the same illness Furthermore they identified various 'meanings' information may have to patients with a serious illness. These included: - being an aid in treatment-related decision-making - allowing control to be maintained over the situation - helping the patient-professional relationship to be constructed - allowing plans to be made - being positive for the patient's emotional state - helping the illness and its impact to be understood - being a source of anxiety - being a potential source of confusion to the patient Meanings were mostly positive. It was suggested that different meanings could co-exist at a given time and that they might change over time. A model of coping with the disclosure of a serious diagnosis is then developped. This model is based on existing models of coping with threatening events, as takeñ from the literature [ref. 77, 78], and integrates findings from the empirical studies. The thesis then analyses the remaining aspects apparent from the two surveys. These range from the identification of preferred information and support providers to factors influencing or impeding information and participation preferences. Specialist doctors were identified by both study populations as the best information providers whilst with regard to support provision views differed between the general public and health professionals. A need for better definition of supportive roles among health care workers seemed apparent. Barriers to information provision often seem related to health professional characteristics or organisational difficulties, and improvements in the latter field could well help optimising patient care. Finally, limitations of the studies are discussed, including questions of representativness of certain results and difficulties with or objections against questionnaire details by some groups of respondents.