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Article
Publication date: 17 November 2011

Stephen Nutt and Lauren Limb

This paper seeks to report the key findings of two studies which were undertaken by Rare Disease UK to: understand patients' and their families' experiences of living with…

298

Abstract

Purpose

This paper seeks to report the key findings of two studies which were undertaken by Rare Disease UK to: understand patients' and their families' experiences of living with a rare disease; identify issues preventing research and access to good quality information, care, treatment and support; identify examples of good practice; and develop recommendations to improve service provision for patients with rare diseases and encourage research.

Design/methodology/approach

Across the two reports discussed, a range of methods were used including: a survey of patients/family members; five multi‐stakeholder working groups; conference workshops; a consultation paper; interviews; and desk research.

Findings

There are a number of detailed findings across the two reports. At a broad level, the findings identify that despite the diverse range of rare diseases each with different symptoms and prognoses, patients often face similar issues. The report also identifies a number of possible solutions to facilitate research, speed up diagnosis, improve co‐ordination of care and ensure high‐quality information is available to patients and professionals.

Practical implications

The findings and recommendations in the two reports discussed are informing the development of a UK plan for rare diseases by all four of the UK's health departments. This plan will be the first strategic approach to improving service provision for all patients with rare diseases in the UK.

Originality/value

Very little research has been conducted into the experiences of patients with rare diseases or on how to improve service provision for all rare diseases in the UK. As a result, the two reports offer a substantial body of new evidence.

Details

Social Care and Neurodisability, vol. 2 no. 4
Type: Research Article
ISSN: 2042-0919

Keywords

Article
Publication date: 1 June 2005

Nicky Mendoza and Norma McGough

This paper gives an overview of the prevalence, symptoms, diagnosis and management of coeliac disease and associated disorders. It also gives some background to gluten…

4383

Abstract

Purpose of the paper

This paper gives an overview of the prevalence, symptoms, diagnosis and management of coeliac disease and associated disorders. It also gives some background to gluten testing in foods and developments in identification of gluten‐free foods at consumer level.

Design/methodology/approach

The most up‐to‐date literature on various aspects of the disease have been considered and included in the report.

Findings

Coeliac disease is now known to affect one in 100 of the population, including both adults and children. As more is understood about the pathophysiology of the disease and antibody screening techniques improve rates of diagnosis are increasing. The biopsy is still required for a firm diagnosis. The range of symptoms that is now recognised is far wider than previously thought, but symptoms are still often missed, or mis‐diagnosed as IBS. The treatment for coeliac disease is the gluten‐free diet, which controls the symptoms and reduces the risk of complications such as osteoporosis and gut cancer. Prescriptions of gluten‐free foods are known to improve adherence to the diet, and with the range of suitable foods in supermarkets increasing rapidly, gluten‐free living is becoming easier.

Originality/value

Information on several aspects of coeliac disease are presented in this paper to give the non‐expert a general, up‐to‐date overview of the disease.

Details

Nutrition & Food Science, vol. 35 no. 3
Type: Research Article
ISSN: 0034-6659

Keywords

Article
Publication date: 1 December 1996

Ulrika Svensk

The disease management approach to improving health care, at the system as well as the hospital level, has proved to be very powerful, producing unprecedented results in…

595

Abstract

The disease management approach to improving health care, at the system as well as the hospital level, has proved to be very powerful, producing unprecedented results in reducing costs while improving quality of care and patient satisfaction. The Boston Consulting Group (BCG), working with a variety of leading managed care providers and pharmaceutical clients, has pioneered the development and dissemination of the disease management concept. Defines the disease management approach and outlines how it differs from the traditional component management approach. Also describes the key elements of disease management, characteristics to look for in a candidate disease, and results achieved so far. Finally, discusses the three strategic roles a health‐care player can take in disease management.

Details

International Journal of Health Care Quality Assurance, vol. 9 no. 7
Type: Research Article
ISSN: 0952-6862

Keywords

Book part
Publication date: 14 December 2016

Adem Hiko and Gelgelo Malicha

This chapter reviews factors responsible for climate change, impacts of the change on animal health, zoonotic diseases, and their linkage with One-Health program.

Abstract

Purpose

This chapter reviews factors responsible for climate change, impacts of the change on animal health, zoonotic diseases, and their linkage with One-Health program.

Design/methodology/approach

This chapter is based on the available literature related to climate change and its effect on animal health and production from different points. The causes and change forcers of climate change, direct and indirect effects of the change on animal health management, host–pathogen–vector interaction, and zoonotic diseases are included. Inter-linkage between climate change and One-Health program are also assessed.

Findings

Beside natural causes of climatic change, greenhouse gases are increasing due to human activities, causing global climate changes which have direct and indirect animal health and production performance impacts. The direct impacts are increased ambient temperature, floods, and droughts, while the indirect are reduced availability of water and food. The change and effect also promote diseases spread, increase survival and availability of the pathogen and its intermediate vector host, responsible for distribution and prevalence of tremendous zoonotic, infectious, and vector-borne diseases. The adverse effect on the biodiversity, distribution of animals and micro flora, genetic makeup of microbials which may lead to emerging and re-emerging disease and their outbreaks make the strong linkage between climate change and One-Health.

Practical implications

Global climate change is receiving increasing international attention where international organizations are increasing their focus on tackling the health impacts. Thus, there is a need for parallel mitigation of climate change and animal diseases in a global form.

Originality/value

Most research on climate change is limited to environmental protection, however this chapter provides a nexus between climate change, animal health, livestock production, and the One-Health program for better livelihood.

Details

Climate Change and the 2030 Corporate Agenda for Sustainable Development
Type: Book
ISBN: 978-1-78635-819-6

Keywords

Book part
Publication date: 23 October 2003

Beth E Jackson

Epidemiology is often described as “the basic science of public health” (Savitz, Poole & Miller, 1999; Syme & Yen, 2000). This description suggests both a close…

Abstract

Epidemiology is often described as “the basic science of public health” (Savitz, Poole & Miller, 1999; Syme & Yen, 2000). This description suggests both a close association with public health practice, and the separation of “pure” scientific knowledge from its application in the messy social world. Although the attainability of absolute objectivity is rarely claimed, epidemiologists are routinely encouraged to “persist in their efforts to substitute evidence for faith in scientific reasoning” (Stolley, 1985, p. 38) and reminded that “public health decision makers gain little from impassioned scholars who go beyond advancing and explaining the science to promoting a specific public health agenda” (Savitz et al., 1999, p. 1160). Epidemiology produces authoritative data that are transformed into evidence which informs public health. Those data are authoritative because epidemiology is regarded as a neutral scientific enterprise. Because its claims are grounded in science, epidemiological knowledge is deemed to have “a special technical status and hence is not contestable in the same way as are say, religion or ethics” (Lock, 1988, p. 6). Despite the veneer of universality afforded by its scientific pedigree, epidemiology is not a static or monolithic discipline. Epidemiological truth claims are embodied in several shifting paradigms that span the life of the discipline. Public health knowledges and practices, competing claims internal and external to epidemiology, and structural conditions (such as current political economies, material technologies, and institutions) provide important contexts in which certain kinds of epidemiological knowledge are more likely to emerge.

Details

Gender Perspectives on Health and Medicine
Type: Book
ISBN: 978-1-84950-239-9

Book part
Publication date: 16 August 2014

Parnali Dhar Chowdhury and C. Emdad Haque

The purpose of this chapter is to offer reflections on conventional theories concerning causes and determinants of diseases. It also intends to examine both theoretical…

Abstract

Purpose

The purpose of this chapter is to offer reflections on conventional theories concerning causes and determinants of diseases. It also intends to examine both theoretical and empirical bases for adopting an Integrated Social-Ecological Systems (ISES) lens as a tool for understanding complexities related to drivers, determinants and causes of diseases.

Design/methodology/approach

We assessed the theoretical underpinnings of a range of historical and contemporary lenses for viewing infectious disease drivers and the implications of their use when used to explain both personal (i.e. individual) and population health. We examined these issues within the empirical context of the City of Dhaka (Bangladesh) by adopting an ISES lens. Within this study an emphasis has been placed on illustrating how feedback loops and non-linearity functions in systems have a direct bearing upon various aspects of infectious disease occurrences.

Findings

A brief triumph over microbes during the last century stemmed in part from our improved understanding of disease causation which was built using disciplinary-specific, monocausal approaches to the study of disease emergence. Subsequently, empirical inquiries into the multi-factorial aetiology and the ‘web of causation’ of disease emergence have extended frameworks beyond simplistic, individualistic descriptions of disease causation. Nonetheless, much work is yet to be done to understand the roles of complex, intertwined, multi-level, social-ecological factors in affecting disease occurrence. We argue, a transdisciplinary-oriented, ISES lens is needed to explain the complexities of disease occurrence at various and interacting levels. More theoretical and empirical formulations, with evidence derived from various parts of the world, is also required to further the debate.

Originality/value

Our study advances the theoretical as well as empirical basis for considering an integrated human-nature systems approach to explaining disease occurrence at all levels so that factors at the individual, household/neighbourhood, local, regional and global levels are not treated in isolation.

Details

Ecological Health: Society, Ecology and Health
Type: Book
ISBN: 978-1-78190-323-0

Keywords

Book part
Publication date: 30 June 2017

Dorit Rubinstein Reiss

Much of the discussion surrounding the antivaccine movement focuses on the decision of parents to not vaccinate their children and the resulting danger posed to others…

Abstract

Much of the discussion surrounding the antivaccine movement focuses on the decision of parents to not vaccinate their children and the resulting danger posed to others. However, the primary risk is borne by the child left unvaccinated. Although living in a developed country with high vaccination rates provides a certain amount of protection through population immunity, the unvaccinated child is still exposed to a considerably greater risk of preventable diseases than one who is vaccinated. I explore the tension between parental choice and the child’s right to be free of preventable diseases. The chapter’s goal is twofold: to advocate for moving from a dyadic framework – considering the interests of the parents against those of the state – to a triadic one, in which the interests of the child are given as much weight as those of the parent and the state; and to discuss which protections are available, and how they can be improved. Specific legal tools available to protect that child are examined, including tort liability of the parents to the child, whether and to what degree criminal law has a role, under what circumstances parental choice should be overridden, and the role of school immunization requirements in protecting the individual child.

Details

Studies in Law, Politics, and Society
Type: Book
ISBN: 978-1-78714-811-6

Keywords

Book part
Publication date: 16 September 2022

Evangelia Tsagaki-Rekleitou, Vasiliki Oikonomou, Archonto-Dimitra Boukouvala, Maria Tsatsou, Theodora Skreka and Constantina Skanavis

There is no doubt that global climate change poses a threat to human health in a number of ways. Globally, 23% of all deaths in 2012 were attributed to the environment and…

Abstract

There is no doubt that global climate change poses a threat to human health in a number of ways. Globally, 23% of all deaths in 2012 were attributed to the environment and an additional 250,000 potential deaths per year from 2030 to 2050 due to the effects of climate change. Heat waves, storms, droughts and floods pose an immediate risk of infectious diseases in humans. Temperature affects the survival rates of pathogens. Some populations and some areas are more vulnerable to infectious diseases due to their lack of ability to respond effectively to the stresses of high temperatures. Excessive rainfall could cause sewage to overflow and promote the onset and spread of infectious diseases ranging in severity from mild gastroenteritis to life-threatening illnesses such as cholera, dysentery and other diseases. Infectious diseases are a category of health problems that are particularly affected by climate change. Infections that occur are air-borne, water-borne and zoonotic. They are affected by the increase of the temperature, but also by the increase of the viral load in the water due to changes in the rainfall. Transmission can also take place through the migration of environmental refugees. Such an important topic could be the subject for students learning English. The purpose of this study will be to highlight the association of climate change with infectious-communicable diseases in order to take action and to create the structure by which students could learn English by studying these definitions.

Details

The Academic Language of Climate Change: An Introduction for Students and Non-native Speakers
Type: Book
ISBN: 978-1-80382-912-8

Keywords

Book part
Publication date: 18 January 2013

Suchit Arora

The Epidemiologic Transition can help us understand a fundamental puzzle about aging. The puzzle stems from two seemingly contradictory facts. The first fact is that death…

Abstract

The Epidemiologic Transition can help us understand a fundamental puzzle about aging. The puzzle stems from two seemingly contradictory facts. The first fact is that death rates from noninfectious degenerative maladies – the so-called diseases of aging – increase as people age. It seems to be at odds with the historical fact that for nearly a century in which people were aging more than ever before, the aggregate rates of such diseases have been decreasing. In what sense can both be true? Crucial to resolving the puzzle are the age-profiles of such diseases in cohorts that grew up in the different regimes of the Transition. For each cohort, noninfectious diseases had increased with age, resulting in an upward-sloping age profile, which affirms the first fact. As the regimes were transitioning from the Malthusian to the modern one, however, the profiles of successive cohorts had been shifting downward: death rates from noninfectious diseases were shrinking at each age, signifying the newer cohorts’ greater aging potentials. The shifting profiles had been renewing the cohort mix of the population, shaping the century-long descent of such diseases in aggregate, giving rise to the historical fact. The profiles had shifted early in the cohorts’ adult years, associating closely with the newer epidemiologic conditions in childhood. Those conditions appear to be a circumstance under which aging potentials of cohorts could be misgauged, including in one troubling episode in the first half of the nineteenth century when the potentials had reversed.

Details

Research in Economic History
Type: Book
ISBN: 978-1-78190-557-9

Keywords

Book part
Publication date: 11 June 2009

Cristina Gutiérrez-Delgado and Veronica Guajardo-Barrón

Objective – To present the challenges arising from the double burden of disease in developing countries, focusing on the case of Mexico, and to propose a strategy for…

Abstract

Objective – To present the challenges arising from the double burden of disease in developing countries, focusing on the case of Mexico, and to propose a strategy for addressing these challenges.

Methodology/approach – Mortality and morbidity data are presented for selected countries and groups of diseases. Specific examples of the pressures faced by the public health services in Mexico to provide and finance treatment for communicable and non-communicable diseases are used to illustrate the extent of the challenges in the context of a country with limited resources.

Findings – Public health systems in developing countries face strong pressure to provide and finance treatment for both communicable and non-communicable diseases, inevitably producing competition among diseases and conditions and requiring trade-offs between equity and efficiency goals.

Implications for policy – In developing countries, addressing the challenges presented by the double burden of disease requires a multidisciplinary approach to develop and strengthen the policymaking process. This involves the use of analytical tools applied to each stage of the planning cycle, in particular the use of an explicit priority setting process together with monitoring and assessment to strengthen decision making under limited resources.

Details

Innovations in Health System Finance in Developing and Transitional Economies
Type: Book
ISBN: 978-1-84855-664-5

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