Promoting Age Equality in the Delivery of Health Care

Research across Europe suggests that most health care systems are ill-equipped to address the needs of the ageing populations they are meant to serve. Modern health care systems were founded on the principles of acute care and are dominated by a focus on growing specialization, efficiency, and expediency. Yet older patients presenting with chronic illness and comorbidities require continuity of care that bridges across traditional medical boundaries and care settings

The hereditary angioedema burden of illness study in Europe (HAE-BOIS-Europe) : background and methodology

Background: Hereditary angioedema (HAE) is a rare but serious disease marked by swelling attacks in the extremities, face, trunk, airway, or abdominal areas that can be spontaneous or the result of trauma and other triggers. It can be life-threatening due to the risk of asphyxiation. While there have been major advancements in our understanding of the immunogenetics of HAE, there are significant gaps in the literature regarding understanding of the humanistic and economic impact of the disease, particularly in Europe. The purpose of the HAE Burden of Illness Study-Europe (HAE-BOIS-Europe), the development and methodology of which is described here, is to better understand the management and impact of HAE from the patient perspective in Europe. Methods/Design: This is a cross-sectional study in which retrospective data were also collected being conducted in Denmark, Germany and Spain. The study is open to patients ages 12 and older with a diagnosis of HAE-I or HAE-II. Data collection includes: (i) a survey on individuals’ health care resource use, direct and indirect medical costs, impact on work and school, treatment satisfaction, and emotional functioning (via the Hospital Anxiety and Depression Scale); and (ii) one-on-one interviews to collect detailed descriptive data and patient testimonials on the impact of HAE on patients’ health-related quality of life. Discussion: The present manuscript describes the development and plans for implementing a multi-country European study with the aim of characterizing the humanistic and economic burden of HAE from the patient perspective. This study will help raise awareness of HAE as a rare but debilitating condition with wide-ranging impacts

Are we failing to provide adequate rescue medication to children at risk of prolonged convulsive seizures in schools?

Objective: This paper explores the issues that arise from the discussion of administering rescue medication to children who experience prolonged convulsive seizures in mainstream schools in the UK. Situation analysis: Current guidelines recommend immediate treatment of children with such seizures (defined as seizures lasting more than 5 min) to prevent progression to status epilepticus and neurological morbidity. As children are unconscious during prolonged convulsive seizures, whether or not they receive their treatment in time depends on the presence of a teacher or other member of staff trained and able to administer rescue medication. However, it is thought that the situation varies between schools and depends mainly on the goodwill and resources available locally. Recommendations: A more systematic response is needed to ensure that children receive rescue medication regardless of where their seizure occurs. Possible ways forward include: greater use of training resources for schools available from epilepsy voluntary sector organisations; consistent, practical information to schools; transparent guidance outlining a clear care pathway from the hospital to the school; and implementation and adherence to each child’s individual healthcare plan. Implications: Children requiring emergency treatment for prolonged convulsive seizures during school hours test the goals of integrated, person-centred care as well as joined-up working to which the National Health Service (NHS) aspires. As changes to the NHS come into play and local services become reconfigured, every effort should be made to take account of the particular needs of this vulnerable group of children within broader efforts to improve the quality of paediatric epilepsy services overall.peer-reviewe

Working to improve the management of sarcoma patients across Europe: a policy checklist

Background: The Sarcoma Policy Checklist was created by a multidisciplinary expert group to provide policymakers with priority areas to improve care for sarcoma patients. Main body: This paper draws on this research, by looking more closely at how France, Germany, Italy, Spain, Sweden and the United Kingdom are addressing each of these priority areas. It aims to highlight key gaps in research, policy and practice, as well as ongoing initiatives that may impact the future care of sarcoma patients in different European countries. A pragmatic review of the published and web-based literature was undertaken. Telephone interviews were conducted in each country with clinical and patient experts to substantiate findings. Research findings were discussed within the expert group and developed into five core policy recommendations. The five identified priority areas were: the development of designated and accredited centres of reference; more professional training; multidisciplinary care; greater incentives for research and innovation; and more rapid access to effective treatments. Most of the countries studied have ongoing initiatives addressing many of these priorities; however, many are in early stages of development, or require additional funding and resources. Conclusion: Gaps in access to quality care are particularly concerning in many of Europe’s lower-resourced countries. Equitable access to information, clinical trials, innovative treatments and quality specialist care should be available to all sarcoma patients. Achieving this across Europe will require close collaboration between all stakeholders at both the national and European level

An international survey of patients with thalassemia major and their views about sustaining life-long desferrioxamine use

BACKGROUND: Management of thalassemia major requires patients to have life-long access to a treatment regimen of regular blood transfusions coupled with iron chelation therapy. The objective of this study was to investigate patients' reasons for missing iron chelation therapy with desferrioxamine, and the support to sustain life-long adherence to treatment. METHODS: From October 1999 to May 2000 a survey of patients with thalassemia major was conducted in ten countries: Cyprus, Egypt, Greece, Hong Kong, India, Iran, Italy, Jordan, Taiwan, and the United States. RESULTS: 1,888 questionnaires (65%) were returned. Most patients (1,573) used desferrioxamine, and 79% administered a dose at least 4 days a week. Inaccessibility of the drug was a common reason for missing a dose in India (51%), and in Iran (25%), whereas, in any other country, it was a reason for less than 17% of patients. Overall, 58% reported reasons for missing a dose related to their beliefs or feelings about the medication, and 42% drug-related side effects. CONCLUSION: Many patients miss doses of desferrioxamine and an opportunity remains to develop interventions that provide more support to sustain use of desferrioxamine

Public involvement policies in health: exploring their conceptual basis.

Despite its obvious appeal, the concept of public involvement is poorly defined and its rationale and objectives are rarely specified when applied to current health policy contexts. This paper explores some of the underlying concepts, definitions, and issues underpinning public involvement policies and proposes a set of criteria and questions that need to be addressed to allow for the evaluation of public involvement strategies and their impact on the health policy process. It aims to further our understanding of the role that public involvement may play in contributing to health systems that are responsive to the needs and priorities of the public, and, ultimately, providing better health and health care services to the community at large

EVALUATION ECONOMIQUE DU DEPISTAGE DU CANCER DU SEIN (DOCTORAT (SANTE PUBLIQUE))

STRASBOURG-Medecine (674822101) / SudocPARIS-BIUM (751062103) / SudocSudocFranceF

Benchmarking health systems: trends, conceptual issues and future perspectives

Purpose - The pupose of this paper is to present an overview of the main conceptual and methodological issues that underlie our current understanding of benchmarking initiatives in the field of health. Design/methodology/approach - The paper is based on a pragmatic review of the literature and policy reports. It outlines some of the major conceptual problems associated with the use of benchmarking indicators and discusses how health policy research and practice is evolving to address the challenges raised, drawing examples from national and international benchmarking initiatives. Findings - Benchmarking has become an intrinsic part of most developed health care systems, yet the impact of benchmarking initiatives on improvements in system performance and their integration within existing policy processes still need to be elucidated. Several methodological challenges remain in the field of benchmarking, many of them related to the selection and quality of indicators used to make comparisons both within and between health care systems. Further research and applications are needed to ensure that benchmarking in health fulfils its objective, namely to further our understanding of where to focus policy efforts in order to improve the performance of health care systems. Originality/value - This paper poses the timely question of whether benchmarking initiatives are in fact guiding health policy towards the improvement of health care system performance. It draws from the policy literature and existing frameworks to offer an outline for the future evaluation of benchmarking initiatives by policy-makers. © Emerald Group Publishing Limited

Towards the eradication of hepatitis B in Taiwan

Viral hepatitides are important public health problems in humans. The etiologic agents were not identified until 1965, when Baruch S. Blumberg found the relationship of Australia antigen to serum hepatitis. The antigen was found to be the surface antigen of the hepatitis B virus (HBV). This observation launched a new era in the diagnosis, prevention and treatment of hepatitis B. Over 15-20 years, the natural history of HBV infection was elucidated, and more importantly, an effective vaccine became available. The routes of transmission were also made clear, rendering effective interruption of the transmission possible. The vaccine together with effective interruption of the transmission contributed greatly to the control of HBV infection. However, these measures do very little for those who have already been chronically infected. Fortunately, specific therapies against chronic hepatitis B started to appear about 10-15 years before, and the treatments have improved substantially in the last few years. Although far from perfect, effective means to treat those who are chronically infected now exist. In Taiwan, acute and chronic liver diseases were rampant as early as the beginning of the last century. Studies around 1975, showed an extremely high prevalence of chronic hepatitis B infection in the general population (15-20%), and 80-90% of the chronic liver diseases and hepatocellular carcinoma were caused by chronic infection with the HBV. This important health problem caught the attention of the government in the late 1970s, and a government-sponsored control program was finalized in 1981. Accordingly, a mass vaccination program against hepatitis B, primarily aiming at immunizing newborn infants, was launched on July 1, 1984. Twenty years after implementation of the program, the hepatitis B carrier rate in children covered by the program decreased by 85%, from similar to 15% to <1%. Most importantly, the deadly sequela of hepatocellular carcinoma in the vaccinees was also found to decrease in parallel. This is the first time that a human cancer was prevented by vaccination. Despite the success, there are still some who were born after implementation of the program but were not prevented from developing chronic hepatitis B infection and hepatocellular carcinoma. Non-compliance to the vaccination schedule, breakthrough infection and intrauterine infection are the causes of the failure. At present, we have effective measures for immunizing susceptible individuals, interrupting the routes of transmission and treating the chronically infected. The time for considering the elimination or even the eradication of HBV infection has come. This is especially true for countries where hepatitis B infection is not endemic. Nevertheless, with the admirable results achieved in the past, Taiwan should also think about elimination/eradication of hepatitis B, even though it will certainly be much more difficult than in the non-endemic countries. In exploring the possibility of eliminating/eradicating hepatitis B in Taiwan, we reviewed the epidemiology of hepatitis B, and analyzed the problems that remain to be tackled in Taiwan. We hope that Taiwan can take further steps towards the elimination or eradication of hepatitis B. Copyright (C) 2011, Elsevier Taiwan LLC. All rights reserved