Objectives Access to healthcare in most western societies is based on equality. Rapidly rising costs have fuelled debates about differentiation in access to healthcare. We assessed the public's perceptions and attitudes about differentiation in healthcare according to lifestyle behaviour. Methods A vignette study was undertaken in participants in a colorectal cancer screening pilot programme in the Netherlands. Screenees with a negative test result received a questionnaire in which nine hypothetical situations were described: three different healthcare settings (screening, lung cancer, (...) class='Hi'>chronic obstructive pulmonary disease) combined with three forms of differentiation each: a difference in premium, waiting list ordering or copayment according to lifestyle. We evaluated the responses using a general hierarchical linear model. Results The percentage of participants in agreement with differentiation varied from 20% to 58% (overall mean of 40%). Significantly more participants were in favour of giving a premium discount to those who do not engage in unhealthy behaviour compared with supporters for higher payments for those who do. More differentiation was supported for non-smoking versus smoking cessation than for participation versus non-participation in screening. We observed in-group favouritism in smokers, but no significant effects of age or disease. There was no support for waiting list ordering based on lifestyle. Conclusions Results of this study show that Dutch citizens eligible for colorectal cancer screening are in favour of some form of financial differentiation in the distribution of healthcare, but that significant differences exist between type of setting and the type of behaviour. Our study can be used in the ongoing discussion about solidarity and behaviour in healthcare. (shrink)

For the past several years patients have been expected to play a key role in their recovery. Self management and disease management have reached a hype status. Considering these recent trends what does this mean for the division of responsibilities between doctors and patients? What kind of role should healthcare providers play? With findings based on a qualitative research project of an innovative practice for people with Chronic Obstructive Pulmonary Disease (COPD) we reflect on these (...) questions. In-depth interviews conducted with people with COPD, physiotherapists and a pulmonologist show that shifting responsibilities require a supportive attitude from healthcare providers and a dialogical communication between patients and professionals. Our findings show more is needed in order to motivate people with COPD to take responsibility and become co-owners in a process of recovery. The case example illustrates that people with COPD need support from fellow patients to learn to accept their disabilities. Awareness that COPD is more than just a lack of air, that mind and body interact, is a first step to investigate other potential problems and to enhance one’s quality of life. (shrink)

Mrs. J was a 66-year-old Muslima who was brought to the hospital from the subacute unit where she had been living for the past 2 years because of intense pain caused by keratitis, an inflamed cornea of a nonfunctioning eye. In addition to her severe eye pain, Mrs. J suffered with a number of other difficult medical conditions, including amyotrophic lateral sclerosis. She was both gastric tube and ventilator dependent and had a history of multiple myleoma, chronic obstructive (...) pulmonary disease, and congestive heart failure. Mrs. J came from a large and traditional Muslim family with 6 children and 17 grandchildren. Although she had full decisionmaking capacity, she designated one of her sons to make her medical decisions for her. (shrink)

Expiratory flow limitation (EFL) can occur in mechanically ventilated patients with chronic obstructive pulmonary disease and other disorders. It leads to dynamic hyperinflation with ensuing deleterious consequences. Detecting EFL is thus clinically relevant. Easily applicable methods however lack this detection being routinely made in intensive care. Using a simple mathematical model, we propose a new method to detect EFL that does not require any intervention or modification of the ongoing therapeutic. The model consists in a monoalveolar (...) representation of the respiratory system, including a collapsible airway that is submitted to periodic changes in pressure at the airway opening: EFL provokes a sharp expiratory increase in the resistance Rc of the collapsible airway. The model parameters were identified via the Levenberg-Marquardt method by fitting simulated data on the airway pressure and the flow signals recorded in 10 mechanically ventilated patients. A sensitivity study demonstrated that only 8/11 parameters needed to be identified, the remaining three being given reasonable physiological values. Flow-volume curves built at different levels of positive expiratory pressure, PEEP, during PEEP trials (stepwise increases in positive end-expiratory pressure to optimize ventilator settings) have shown evidence of EFL in three cases. This was concordant with parameter identification (high Rc during expiration for EFL patients). We conclude from these preliminary results that our model is a potential tool for the non-invasive detection of EFL in mechanically ventilated patients. (shrink)

Robert Truog describes the controversial randomized controlled trials (RCTs) of extracorporeal membrane oxygenation (ECMO) therapy in newborns. Because early results with ECMO indicated that it might be a great advance, saving many lives, Truog argues that ECMO should not have been tested using RCTs, but that a long-term, large-scale observational study of actual clinical practice should have been conducted instead. Central to Truog’s argument, however, is the idea that ECMO is an unusual case. Thus, it is an open question whether (...) Truog’s conclusions can be extended to other areas of medical research. In this paper, I look at epistemological and ethical issues arising in the care of patients with chronic diseases, using ECMO as a starting point. Both the similarities and the dissimilarities of these two cases highlight important issues in biomedical research and support a conclusion similar to Truog’s. Observational studies of clinical practice provide the best evidence to inform the treatment of patients with chronic disease. (shrink)

Chronic myeloid leukemia (CML) is a cancer of the hematopoietic system initiated by a single genetic mutation which results in the oncogenic fusion protein Bcr-Abl. Untreated, patients pass through different phases of the disease beginning with the rather asymptomatic chronic phase and ultimately culminating into blast crisis, an acute leukemia resembling phase with a very high mortality. Although many processes underlying the chronic phase are well understood, the exact mechanisms of disease progression to blast crisis (...) are not yet revealed. In this paper we develop a mathematical model of CML based on causal Bayesian networks in order to study possible disease progression mechanisms. Our results indicate that an increase of Bcr-Abl levels alone is not sufficient to explain the phenotype of blast crisis and that secondary changes such as additional mutations are necessary to explain disease progression and the poor therapy response of patients in blast crisis. (shrink)

Attention has become increasingly focused in recent years on the role agri-food system transformations have played in driving the global diet-related chronic disease burden. Identifying the role played by the food-consuming industries (predominantly large manufacturers, processors, distributors, and retailers) in particular, and identifying possibilities to facilitate healthier diets through intervening in these industries, have been identified as a research priority. This paper explores the potential for one promising analytic framework—the nutrition-oriented value chain approach—to contribute to this area, drawing (...) on recent insights from the global value chain (GVC) literature to develop an institutionally-enriched approach. The research focused on a canned deciduous fruit value chain linking growers, processors, and retailers in South Africa and Australia. Findings reveal the multiple drivers which have converged to shape this value chain over time, and the key actors which are influencing product availability, composition, price, and promotion within this sector. With its emphasis on identifying implications for end-consumption, rather than economic outcomes within the chain, nutrition-oriented value chain research represents a significant shift in focus for the GVC framework. Therefore, an immediate opportunity for further research is to extend the analytic framework to primary research on end-consumption behaviours. (shrink)

In this paper I will briefly discuss flourishing and freedom, relating them to health and disease; discuss the tensions between flourishing and freedom; and exemplify how those discussions are relevant to chronic disease suffering. The concept of freedom has significant connections with the concepts of health, disability and disease. Understanding disease and disability in terms of the loss of aspects of freedom may help our understanding of the suffering that arises from chronic disease. (...) On the other hand, flourishing may require a degree of adversity. Therefore disability and disease may be conducive to flourishing. Flourishing may be understood as subordinated to freedom, as a path to freedom, or as transcending freedom. It is suggested that freedom and flourishing are expressed as mutually enhancing cycles, actualized according to the personal circumstances that will ground their expression. In a distant horizon of innocent spontaneous self-expression, flourishing and freedom may become coincident. Regarding chronic disease as a constraint on ‘species-typical’ abilities to fulfill one’s significant life interests, as well as an unwanted intrusion into the patient’s life, presents chronic disease suffering as a loss of both positive and negative freedom. The conceptual relation between flourishing and freedom will thus organise the possibilities the sufferer sees as open to their self. (shrink)

Globally, chronic disease and conditions such as diabetes, cardiovascular disease, depression and cancer are the leading causes of morbidity and mortality. Why, then, are public health efforts and programs aimed at preventing chronic disease so difficult to implement and maintain? Also, why is primary care—the key medical specialty for helping persons with chronic disease manage their illnesses—in decline? Public health suffers from its often being socially controversial, personally intrusive, irritating to many powerful corporate (...) interests, and structurally designed to be largely invisible and, as a result, taken for granted. Primary care struggles from low reimbursements, relative to specialists, excessive paperwork and time demands that are unattractive to medical students. Our paper concludes with a discussion of why the need for more aggressive public health and redesigned primary care is great, will grow substantially in the near future, and yet will continue to struggle with funding and public popularity. (shrink)

Living things are often plastic during their early development and are moulded by the environment. Many human fetuses have to adapt to a limited supply of nutrients, and in doing so they permanently change their physiology and metabolism. These programmed changes may be the origins of a number of diseases in later life, including coronary heart disease, stroke, diabetes and hypertension.

Background: Spirometry for early detection of chronic obstructive pulmonary disease and smoking cessation is criticised because of the potential negative effects of labelling with disease. Aim: To assess the effects of opinions of smokers with mild to moderate COPD on the effectiveness of spirometry for smoking cessation, the justification of early detection of airflow limitation in smokers and the impact of confrontation with COPD. Design: Qualitative study with data from a randomised controlled trial. Setting: General (...) population of Dutch and Belgian Limburg. Methods: Semistructured ethical exit interviews were conducted with 205 smokers who were motivated to quit smoking and had no prior diagnosis of COPD but were detected with airflows limitation by means of spirometry. They received either counselling, including labelling with COPD, plus with nortriptyline for smoking cessation, counselling excluding labelling with COPD, plus nortriptyline for smoking cessation or care as usual for smoking cessation by the general practitioner, without labelling with COPD. Results: Of the participants, 177 agreed or completely agreed that it is justified to measure lung function in heavy smokers. These participants argued that measuring lung function raises consciousness of the negative effects of smoking, helps to prevent disease or increases motivation to stop smoking. Most of the 18 participants who disagreed argued that routinely measuring lung function in smokers would interfere with freedom of choice. Conclusions: Labelling with disease is probably a less important issue in the discussion about the pros and cons of early detection of COPD. (shrink)

This paper considers how we can conceptualize a “global response” to chronic, non-communicable diseases (NCDs) – including cardiovascular disease, cancer, diabetes, and tobacco-related diseases. These diseases are the leading cause of death and disability in developed countries, and also in developing countries outside sub-Saharan Africa. The paper reviews emerging and proposed initiatives for global NCD governance, explains why NCDs merit a global response, and the ways in which global initiatives ultimately benefit national health outcomes. As the global response (...) to NCDs matures, and the number of initiatives and partnerships increases, it will become increasingly important to map their respective contributions, and to evaluate progress overall. It is not yet clear what institutional mechanism, if any, will rise above the sea of surrounding initiatives to play this global role. This paper therefore aims to provide a conceptual map for making sense of what individual initiatives contribute to global governance. This map also draws attention to the distinctively “global” public health functions that a global response to NCDs should seek to discharge. (shrink)

This article describes compassion as perceived within the relationship between nurses and older persons with a chronic disease. The aim of the study is to understand the benefit of compassion for nursing practice within the context of long-term care. The design of the study involves a qualitative analysis of in-depth interviews with nurses and patients in three different care-settings. Results show the nature of compassion in seven dimensions: attentiveness, listening, confronting, involvement, helping, presence and understanding. Analysis of the (...) data also shows in what way opinions of participants relate to issues raised in a previous literature study, for example the difference between pity and compassion. The conclusion states that compassion is a valuable process which motivates patients as well as nurses to cooperate in achieving relevant outcomes of care. The discussion involves some methodological issues. For one thing, further confirmation of the dimensions found is recommended. (shrink)

How might the psycho-social effects of chronic skin disease, its treatments (and discontents) be figuratively expressed in writing and painting? Does the art reveal common denominators in experience and representation? If so, how do we understand the cryptic language of these expressions? By examining the works of artists with chronic skin diseases—John Updike, Elizabeth Bishop, and Zelda Fitzgerald—some common features can be noted. Chronically broken skin can fracture the ego or self-perception, resulting in a disturbed body image, (...) which leads to personality disorders and co-morbid affective disorders such as anxiety and depression. The vertiginous feeling that results can be noted in the paradoxical characters, figures, and psyches portrayed in the works of these artists. This essay will examine the more specific ways in which artists disclose and/or conceal their experiences and the particular ways in which these manifest in their works. While certain nuances exist, the common denominators give us a starting point for developing an eczema aesthetic, a code for interpreting the ways in which artists’ experiences with skin disease manifest in their works. (shrink)

The scientific understanding of common chronic disease began in the mid-19th century, driven in large part by the development of the modern autopsy. For cardiovascular disease, the recognition that rigid plaques were obstructing muscular arteries, especially in the coronary arteries, provided a mechanism to explain what had been a mysterious "chest pain–sudden collapse" syndrome. The origin of these plaques was totally obscure, however, and they were given the descriptive name of "atherosclerosis," or "hardened porridge" in Greek. Not (...) until 50 years later, when animal experimental models serendipitously revealed the hyper-lipidemic consequences of a diet high in animal fat, followed by accretion of lipid... (shrink)

This paper starts by establishing a prima facie case that disadvantaged groups or individuals are more likely to get a chronic disease and are in a disadvantaged position to adhere to chronic treatment despite access through Universal Health Coverage. However, the main aim of this paper is to explore the normative implications of this claim by examining two different but intertwined argumentative lines that might contribute to a better understanding of the ethical challenges faced by chronic (...) disease health policy. The paper develops the argument that certain disadvantages which may predispose to illness might overlap with disadvantages that may hinder self-management, potentially becoming disadvantageous in handling chronic disease. If so, chronic diseases may be seen as disadvantages in themselves, describing a reproduction of disadvantage among the chronically ill and a vicious circle of disadvantage that could both predict and shed light on the catastrophic health outcomes among disadvantaged groups—or individuals—dealing with chronic disease. (shrink)

Applying a necessary condition communication theory formalism roughly similar to that of Dretske, but focused entirely on the statistical properties of long sequences of signals emitted by the interacting cognitive modules of human biology, we explore the regularities apparent in comorbid psychiatric and chronic physical disorders using an extension of recent perspectives on autoimmune disease. We find that structured psychosocial stress can literally write a distorted image of itself onto child development, resulting in a life course trajectory to (...) characteristic forms of comorbid mind/body dysfunction affecting both dominant and subordinate populations within a pathogenic social hierarchy. (shrink)

Chronic diseases represent the major illness burden of developed nations. A chronic disease databank system consists of parallel longitudinal data sets from diverse locations describing the courses of thousands of patients with chronic illness over many years. Illustrated by ARAMIS (The American Rheumatism Association Medical Information System), such data resources facilitate analysis of long term health outcomes and the factors associated with particular outcomes. A model for clinical investigation of contemporary disease is presented, based on (...) the overwhelming prevalence of chronic illness, the variability, complexity, and uniqueness of the individual patient course, the difficulties of traditional univariate reductionist approaches, and the time span required for study. In this model, data are systematically accrued and continually analyzed, and the data collected are gradually modified based upon evolving anticipation of future needs. The strategies underlying the development of ARAMIS are described, investigational results summarized, and future directions outlined. Keywords: ARAMIS, Chronic Disease Databanks, Prognosis, Health Outcomes CiteULike Connotea Del.icio.us What's this? (shrink)

Chronic childhood disease brings psychological challenges for families and carers as well as the children. Roger Bradford explores how they cope with these challenges, the psychological and social factors that influence outcomes and the ways in which the delivery of services can be improved to promote adjustment. Drawing on concepts from health psychology and family therapy, the author proposes a multi-level model of care which takes into account the child, the family and the wider care system and how (...) they interrelate and influence each other. (shrink)

Chronic diseases are recognized as a leadingcause of mortality, morbidity, health careutilization and cost. A constant tailoring ofcare to the actual needs of individualpatients, complexity and long duration are thedistinguishing features of chronic diseasemanagement.

PurposeThe acute-on-chronic exacerbations of end-stage respiratory diseases often result in prolonged hospital stays, relating these events to ethical conflicts in the fields of medical futility and distributive justice. This study aimed to understand patients’ preferences for life-sustaining treatments when clinically stable and during regular follow-up visits, and to determine the factors that can influence these preferences.ProcedureThis was a prospective, observational, exploratory study using convenience sampling. Over a three-year period, the study enrolled 106 adult outpatients with end-stage pulmonary (...) class='Hi'>disease on long-term oxygen treatment with/without noninvasive mechanical ventilation with dyspnoea scores of 6 or more in the modified Borg dyspnoea scale and one of the following: Gold stage IV, diffusing capacity <40%, heart failure ) stage III/IV, or systolic pulmonary artery... (shrink)

Pulmonary rehabilitation has demonstrated patients’ physiological and psychosocial improvements, symptoms reduction and health-economic benefits whilst enhances the ability of the whole family to adjust to illness. However, PR remains highly inaccessible due to lack of awareness of its benefits, poor referral and availability mostly in hospitals. Novel models of PR delivery are needed to enhance its implementation while maintaining cost-efficiency. We aim to implement an innovative community-based PR programme and assess its cost-benefit. A 12-week community-based PR will be implemented (...) in primary healthcare centres where programmes are not available. Healthcare professionals will be trained. 73 patients with CRD and their caregivers will compose the experimental group. The control group will include dyads age- and disease-matched willing to collaborate in data collection but not in PR. Patients/family-centred outcomes will be dyspnoea, fatigue, cough and sputum, impact of the disease, emotional state, number of exacerbations, healthcare utilisation, health-related quality of life and family adaptability/cohesion. Other clinical outcomes will be peripheral and respiratory muscle strength, muscle thickness and cross sectional area, exercise capacity, balance and physical activity. Data will be collected at baseline, at 12 weeks, at 3- and 6-months post-PR. Changes in the outcome measures will be compared between groups, after multivariate adjustment for possible confounders, and effect sizes will be calculated. A cost-benefit analysis will be conducted. This study will enhance patients access to PR, by training healthcare professionals in the local primary healthcare centres to conduct such programmes and actively involving caregivers. The cost-benefit analysis of this intervention will provide an evidence-based insight into the economic benefit of community-based PR in chronic respiratory diseases. The trial was registered in the ClinicalTrials. gov U.S. National Library of Medicine, on 10th January, 2019. (shrink)

Narratives of the experience of pulmonary tuberculosis are relatively rare in the Irish context. A scourge of the early twentieth century, TB was as much a social as a physically debilitating disease that rendered sufferers silent about their experience. Thus, the personal diaries and letters of Irish poet, Seán Ó Ríordáin, are rare. This article presents translations of his personal papers in a historico-medical context to chronicle Ó Ríordáin’s experience of a life marred by respiratory disease. Familiar (...) to generations of schoolchildren are his imaginative poems, whose lively metre punctuated the Irish language curriculum from primary through to secondary schooling; for most they leave an indelible mark. Such buoyant poems however belie the reality of his existence, lived in the shadow of chronic illness, and punctuated with despair over his condition and anxiety about the periods of extended sick leave his illness necessitated. Although despair dominated his diaries and he routinely begged God, Mary, the Saints and the devil for death, they were also the locus where his creativity developed. In his diaries, caricatures of friends and sketches of everyday things nestle among the first lines of some of his most influential poems and quotes from distinguished philosophers and writers. Evocative and tragic, his diaries offer a unique prism to the experience of respiratory disease in Ireland. (shrink)