BackgroundCommonly applied measures of symptoms of anxiety are not sensitive to disease-specific anxiety in patients with chronic obstructive pulmonary disease. There is a need for validated instruments measuring COPD-specific anxiety. Therefore, we translated the COPD-Anxiety Questionnaire into Danish and performed an initial validation of the psychometric properties in a sample of patients with COPD.Materials and MethodsTranslation procedures followed the World Health Organization guidelines. Participants with COPD completed questionnaires measuring COPD-specific anxiety, general psychological distress as well (...) as variables related to COPD, quality of life, and socio-demography.ResultsA total of 260 patients with COPD completed questionnaires. The Danish version of CAF-R-DK demonstrated acceptable Cronbach’s α values that were comparable with those of the original CAF. As expected, the CAF-R-DK showed positive correlations with convergent constructs and negative correlations with discriminant constructs. However, the results for specific subdomains of the CAF-R-DK indicated inconsistency in the underlying concept of disease-specific anxiety, which was also suggested based on the subsequent confirmatory and exploratory factor analyzes.ConclusionThe CAF could serve as an important supplement to generic psychological distress screening of patients with COPD in somatic health care settings, and the questionnaire is now available in Danish. Translation into other languages is needed with the purpose of obtaining data for further testing the psychometric properties of the questionnaire. (shrink)

BackgroundChronic airway diseases are prevalent and costly conditions. Interdisciplinary rehabilitation programs that include Acceptance and Commitment-based components could be important to tackle the vicious circle linking progression of the disease, inactivity, and psychopathological symptoms.MethodsA retrospective evaluation of routinely collected data of an interdisciplinary rehabilitation program was performed. The program included group sessions including patient education, breathing exercise, occupational therapy and an ACT-based psychological treatment, and individual sessions of physical therapy. Demographic data, clinical characteristics of the patients and the values (...) of outcome variables before treatment, at discharge, at 3 months, and at 6 months were extracted from medical records. Multiple imputation was employed to address missing data. Linear mixed models were employed to assess changes over time. Multivariable logistic regression was performed to assess predictors of a minimum clinically important change of health status from baseline to the 6-months follow-up.ResultsData from 31 patients with chronic obstructive pulmonary disease and 12 patients with bronchiectasis were extracted. Health status improved from baseline to discharge to the 3 months follow-up, but not to the 6 months follow-up. Anxiety and depression improved across all the time points. Quality of life did not improve over time. Having a worse health status at baseline and fewer depressive symptoms were significantly associated with achieving a minimum clinically important change of health status at 6 months. The effects of the interdisciplinary program were not different for patients with COPD or with bronchiectasis.DiscussionInterdisciplinary programs including ACT-based components are promising treatments for the rehabilitation of patients with chronic airway diseases. (shrink)

Patients with chronic obstructive pulmonary disease are characterized by attenuated pulmonary function and are frequently reported with cognitive impairments, especially memory impairments. The mechanism underlying the memory impairments still remains unclear. We applied resting-state functional magnetic resonance imaging to compare the brain local activities with static and dynamic amplitude of low-frequency fluctuations among patients with COPD and healthy controls. Compared with HC, COPD patients exhibited decreased sALFF in the right basal ganglia and increased dALFF in (...) the bilateral parahippocampal/hippocampal gyrus. The reduced the left basal ganglia was associated with lower oxygen partial pressure. Besides, the increased dALFF in the left hippocampal/parahippocampal cortex was associated with poor semantic-memory performance and the increased dALFF in the left hippocampal/parahippocampal cortex was associated the forced vital capacity. The present study revealed the abnormal static and dynamic local-neural activities in the basal ganglia and parahippocampal/hippocampal cortex in COPD patient and its relationship with poor lung function and semantic-memory impairments. (shrink)

HLDING A‐G and HEGGDAL K. Nursing Inquiry 2012; 19: 345–356 Patients’ experiences of health transitions in pulmonary rehabilitationPeople who live with chronic obstructive pulmonary disease (COPD) experience major changes in health. Coping with the illness and caring for themselves places extensive demands on them. Thus, pulmonary rehabilitation (PR) is recommended as a means to facilitate healthy transitions in everyday life with COPD. This study explores the experience of patients with COPD in terms of their (...) transitions in health during and after PR. The research was inspired by interpretive phenomenology. Thirty‐three individual qualitative interviews were conducted with eighteen patients recruited from Norwegian PR units. A thematic analysis of the interviews was performed. The interviewees described participation in PR as a time of increasing awareness of opportunities for health and well‐being with strengthened hope. The year following PR was dominated by their ongoing challenge to acknowledge limitations and explore opportunities in everyday life. Continuation of healthy transitions was facilitated by peer and professional support. The study highlights the personal resources that patients with COPD have access to in order to promote their own health. The study also highlights their vulnerability during illness and rehabilitation. The findings critique time‐limited PR and support the current trends towards patient‐centred rehabilitation efforts that incorporate user involvement and self‐management education. (shrink)

Chronic obstructive pulmonary disease (COPD) is one of the most deadly and costly chronic diseases in the world characterized by many breathing problems. The management of COPD and the prevention of exacerbations are a priority goals to improve the quality of life in patients affected by this illness. In addition, it is also crucial to improve the patients’ adherence to care which, in turn, depends on their knowledge and understanding of some factors such as the (...) prescribed medical treatment, changes in dailylife, and the process of breathing. In turn, the adherence to care leads to greater autonomy for the patient who is thus able to better manage his illness. Here we presented the application of the Model IARA in patients affected by COPD in order to achieve their autonomy in illness management which, in turn, leads to a better quality of life. IARA is an intervention program which improve the awareness and knowledge of patients with respect to both the disease and symptoms through health education. Moreover, through IARA the patients are encouraged to become more actively involved in COPD care process, also regarding drug therapy adherence. Using St. George's Respiratory Questionnaire combined with qualitative analysis, we demonstrated that IARA could be considered a useful approach in COPD management. (shrink)

In the past decade, the availability of genetically modified animals has enabled the discovery of interesting roles for phosphatidylinositol 3‐kinase‐γ (PI3Kγ) and ‐δ (PI3Kδ) in different cell types orchestrating innate and adaptive immune responses. Therefore, these PI3K isoforms appear to be attractive drug targets for the treatment of diseases caused by unrestrained immune reactions. Currently, pharmacological targeting of PI3Kγ and/or PI3Kδ represents one of the most promising challenges for companies interested in the development of novel safe treatments for inflammatory diseases. (...) In this review we provide a general outline of PI3Kγ‐ and PI3Kδ‐specific functions in distinct subsets of inflammatory cells. We also discuss the therapeutic impact of novel compounds targeting PI3Kγ, PI3Kδ or both, in mouse models of autoimmune disorders (systemic lupus erythematosus (SLE) and rheumatoid arthritis), respiratory diseases (allergic asthma and chronic obstructive pulmonary disease) and cardiovascular dysfunctions (atherosclerosis and myocardial infarction). (shrink)

Patients suffering from chronic obstructive pulmonary diseases, frequently exhibit expiratory airflow limitation. We propose a mathematical model describing the mechanical behavior of the ventilated respiratory system. This model has to simulate applied positive end-expiratory pressure effects during expiration, a process used by clinicians to improve airflow. The proposed model consists of a nonlinear two-compartment system. One of the compartments represents the collapsible airways and mimics its dynamic compression, the other represents the lung and chest wall compartment. For (...) all clinical conditions tested, the mathematical model simulates the removal of expiratory airflow limitation at PEEP lower than 70–80% of intrinsic end-expiratory pressure, i.e. the end-expiratory alveolar pressure without PEEP. It also shows the presence of an optimal PEEP. The optimal PEEP contributes to decrease PAet from 7.4 ± 0.9 to 5.4 ± 0.9 hPa. This simplistic mathematical model gives a plausible explanation of the expiratory airflow limitation removal with PEEP and a rationale to the practice of PEEP application to airflow limited patients. (shrink)

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)

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)

How do technologies such as webcams influence health care and what concepts may describe this? This article explores the literature and analyses what people looking through webcams do within a particular health care practice in the Netherlands, that is, within the rehabilitation of people suffering from severe chronic obstructive pulmonary disease or asthma. Several ways to describe the activities webcams support and perform are identified. The webcam is concentrating the activities of its users, by making them (...) focus on the task at hand and magnifies the characteristics of the already existing relationships between webcam users by imposing a relational distance that fits best with intimate contacts. Although webcams shift notions of space and distance, their working appears to be related, to a great extent, to their location. (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)

An eight hundred‐square‐foot house greets me and a licensed practical nurse. We walk on uneven, disintegrating concrete steps before entering the patient's daughter's home, and we can see a haze of cigarette smoke before we enter the living room. Although the patient is old enough for retirement, she tells me that, if it were up to her, she would still be working. Noticing the medical equipment occupying her room—oxygen, pulse oximeter, and blood pressure machine—I am reminded that our health system (...) is trying, like many other systems across the country, to manage people's chronic illness better by bringing technology into patients’ homes in hopes of preventing hospital readmissions. For this patient, the hope is that, if she gets symptoms that suggest another exacerbation of her chronic obstructive pulmonary disease, she can manage it herself. If I hadn't spent hundreds of hours in patients’ homes, I would have a low threshold for ordering home‐based nursing and telehealth; it would often seem like a good solution. (shrink)

Palliative care seeks to improve the quality of life for patients suffering from the impact of life‐limiting illnesses. Palliative care encompasses but is more than end‐of‐life care, which is defined as care during the final hours/days/weeks of life. Although palliative care policies increasingly require all healthcare professionals to have at least basic or non‐specialist skills in palliative care, international evidence suggests there are difficulties in realising such policies. This study reports on an action research project aimed at developing respiratory nursing (...) practice to address the palliative care needs of patients with advanced chronic obstructive pulmonary disease (COPD). The findings suggest that interlevel dynamics at individual, team, interdepartmental and organisational levels are an important factor in the capacity of respiratory nurses to embed non‐specialist palliative care in their practice. At best, current efforts to embed palliative care in everyday practice may improve end‐of‐life care in the final hours/days/weeks of life. However, embedding palliative care in everyday practice requires a more fundamental shift in the organisation of care. (shrink)

This paper introduces the design principle of legibility as means to examine the epistemic and ethical conditions of sensing technologies. Emerging sensing technologies create new possibilities regarding what to measure, as well as how to analyze, interpret, and communicate said measurements. In doing so, they create ethical challenges for designers to navigate, specifically how the interpretation and communication of complex data affect moral values such as autonomy. Contemporary sensing technologies require layers of mediation and exposition to render what they sense (...) as intelligible and constructive to the end user, which is a value-laden design act. Legibility is positioned as both an evaluative lens and a design criterion, making it complimentary to existing frameworks such as value sensitive design. To concretize the notion of legibility, and understand how it could be utilized in both evaluative and anticipatory contexts, the case study of a vest embedded with sensors and an accompanying app for patients with chronic obstructive pulmonary disease is analyzed. (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)

Chronic diseases are major causes of health inequalities. Community nurses can potentially make large contributions to chronic illness prevention and management in Israel but may be obstructed by professional dominance of physicians. However, insufficient research exists about community nursing in Israel, and how it may differ from other countries. This study aims to document chronic disease‐related community nursing roles in Israel, identify changes and trends in community nursing roles that may increase social justice, and understand how (...) the roles and trends in community health nursing in Israel may differ from developments in other countries. In‐depth interviews were performed with 55 Israeli health system professionals, and 692 nurse care‐givers were asked open‐ended questions. Interview answers were analyzed to find themes and trends. The study found that community nurse roles in Israel have expanded, especially for chronic disease control. Commonalities exist with countries such as the United States and the UK, albeit with important differences. However, continued conflicts with physicians exist, which can limit nurses' contributions to reducing health inequalities. Community nurses' importance is growing. Enabling them to overcome professional dominance and improve chronic disease control can help reduce health inequalities in Israel and elsewhere. (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)

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)

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)

ObjectiveThis study aims to investigate the lived experience in patients with obstructive sleep apnea syndrome and comorbid obesity following after continuous positive airway pressure therapy made with the disease the device, and to identify barriers and facilitators to the use of CPAP to improve rehabilitation provision and aid in disease self-management.MethodsQualitative research was conducted using three focus groups with a representative sample of 32 inpatients undergoing a 1-month pulmonary rehabilitation program at the IRCSS Istituto Auxologico Italiano (...) San Giuseppe Hospital, Verbania, Italy. The focus groups were recorded on tape, and contemporaneous notes were made. The tapes were transcribed verbatim, and Interpretative Phenomenological Analysis was used to develop themes.ResultsSix main themes were extracted: Living the diagnosis as a shock; You should not sleep on it: the importance of prevention; The adjustment to CPAP; Barriers and facilitators to the use of CPAP; Three in a bed; and The relationship with the healthcare system.ConclusionResults of this study suggest potential avenues for interventions to increase adherence to CPAP, including the provision of information and continued support. Individual counseling providing strategies aimed at helping the person to cope with the emotional problem and relational difficulties associated with the use of CPAP, and at strengthening self-efficacy and self-management skills are also encouraged for optimal care during the rehabilitation program. (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)

Patients with insomnia complain of problems with sleep onset or sleep maintenance or early morning awakenings, or a combination of these, despite adequate opportunity and circumstances for sleep. In addition, to fulfill the diagnostic criteria for insomnia the complaints need to be associated with negative daytime consequences. For chronic insomnia, the symptoms are required to be present at least 3 days per week for a duration of at least 3 months. Lastly, for insomnia to be defined as a disorder, (...) the sleep complaints and daytime symptoms should not be better explained by another sleep disorder. This criterion represents a diagnostic challenge, since patients suffering from other sleep disorders often complain of insomnia symptoms. For instance, insomnia symptoms are common in e.g., obstructive sleep apnea and circadian rhythm sleep-wake disorders. It may sometimes be difficult to disentangle whether the patient suffers from insomnia disorder or whether the insomnia symptoms are purely due to another sleep disorder. Furthermore, insomnia disorder may be comorbid with other sleep disorders in some patients, e.g., comorbid insomnia and sleep apnea. In addition, insomnia disorder is often comorbid with psychological or somatic disorders and diseases. Thus, a thorough assessment is necessary for correct diagnostics. For chronic insomnia disorder, treatment-of-choice is cognitive behavioral therapy, and such treatment is also effective when the insomnia disorder appears comorbid with other diagnoses. Furthermore, studies suggest that insomnia is a heterogenic disorder with many different phenotypes or subtypes. Different insomnia subtypes may respond differently to treatment, but more research on this issue is warranted. Also, the role of comorbidity on treatment outcome is understudied. This review is part of a Research Topic on insomnia launched by Frontiers and focuses on diagnostic and treatment challenges of the disorder. The review aims to stimulate to more research into the bidirectional associations and interactions between insomnia disorder and other sleep, psychological, and somatic disorders/diseases. (shrink)

The question of whether Do Not Resuscitate orders should be sustained in the operating room was brought to our ethics committee by a pulmonologist and involved one of his patients for whom he serves as a primary care physician. His patient, a woman with chronic obstructive lung disease was electing, for comfort purposes, to have a hip pinning following a fracture. At the same time, she wished to have a DNR order covering her entire hospital stay. The (...) anesthesiologist described her direction as “improper” and refused to participate in surgical procedures if DNR orders extended to the operating room. The patient refused to rescind the order during surgery. As a result, the surgery was canceled to the great chagrin of the patient. (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)

Judging by their contribution to the global burden of death and disability, chronic, non-communicable diseases are the most serious health challenge facing the world today. The statistics tell a frightening story. Over 35 million people died from chronic diseases in 2005 — principally cardiovascular disease, cancer, and chronic respiratory disease. Driven by population growth and population ageing, deaths from non-communicable diseases are expected to increase by 17% over the period 2005-2015, accounting for 69% of global (...) deaths by 2030.Cardiovascular disease, the leading cause of death in all regions except sub-Saharan Africa, is estimated to rise from 17.1 million deaths to 23.4 million deaths. Cancer deaths will increase from 7.4 million to 11.8 million over the same period. Due to population growth, mergers and acquisitions, and the marketing of global cigarette brands in developing countries, deaths from tobacco will rise from 5.4 million per year, through 6.4 million, to 8.3 million by 2030. These figures include a doubling in tobacco deaths in low- and middle-income countries from 3.4 million to 6.8 million lives annually. By 2015, smoking will cause 50% more deaths than HIV/AIDS. (shrink)

ObjectivesThis study aimed to describe the experiences and challenges faced by adolescents with moderate and severe congenital heart defects or Chronic Rheumatic Heart Disease and to determine their needs in order to develop an Adolescent Transition Psychoeducational Program.MethodsThe study involved seven adolescents with moderate to severe CHD/CRHD, six parents, and four health care providers in Institute Jantung Negara. Participants were invited for a semi-structured interview. Qualitative data were analyzed through the Atlas.ti 7 program using triangulation methods.Results/conclusionsWe identified five (...) themes concerning the experience and challenges of adolescents relating to: emotional/psychological issues; the progress of the illness; relationship issues; future preparation; and, school and community. These themes were identified together with eleven subcategories. The staff expressed support for the development of the Adolescent Transition Psychoeducational Program and adolescents with CHD/CRHD and their parents were willing to participate in the program if their schedule allowed. Their suggestions to improve the program were classified into six categories, with two main themes, the self-management of illness in life and the future; and, social support. In conclusion, the findings from the situation analysis act as a basis for a conceptual framework that will contribute to the development of an Adolescent Transition Psychoeducational Program that aims to empower adolescents with CHD/CRHD, enabling them to manage challenges during the transition phase between childhood and adulthood. (shrink)

For the past two decades, agricultural workers in regions of Central America have reported an epidemic of chronic kidney disease of undetermined etiology (CKDu) that is not associated with established risk factors of chronic kidney disease. Several hypotheses have emerged, but the etiology of CKDu remains elusive and controversial. The aim of this literature review was to describe the potential risk factors of CKDu in Mesoamerica and implications for the U.S. agricultural worker population. PubMed and CINAHL (...) databases were searched for articles published between 2000 and 2018 that examined CKDu in Mesoamerica; 29 original studies were included in this review. CKDu is a multifactorial disease that is often asymptomatic with hallmark characteristics of elevated serum creatinine and blood urea nitrogen (BUN), low glomerular filtration rate, electrolyte abnormalities, and non-nephrotic proteinuria. Reducing the global prevalence of CKDu will require more robust studies on causal mechanisms and on interventions that can reduce morbidity and mortality in vulnerable populations. (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)

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)

Living with a chronic condition represents a strenuous experience that often could be lived as a sequence of waiting and crisis times. Therapeutic path incidents could represent however a catalysts and revelatory time, useful to patients to discover their own resources. A qualitative study according to the phenomenological hermeneutic perspective was conducted to understand the kind of skills expressed by the patients during a difficult episode, and the characteristics that identify patients who can overcome them better. From September 2019 (...) to August 2020 twenty-three patients followed-up in four Hospital Units of Northeastern of Italy were enrolled. All the patients described an episode linked whit their pathological condition; they mentioned mainly supportive, reactive, or behavioral strategies and an acceptance attitude. The sample characteristics may explain the recurring acceptance attitude; however, the younger individuals, those with a higher level of education and those who faced precedent negative life experiences seem to better overcome challenging events. It can’t be taken for granted that patients possess all the skills necessary to overcome the frequent challenging episodes they have to face; for this reason, healthcare professionals should assess their learning and reactive attitude in order to tailor for them therapeutic education paths. (shrink)

In 1998 I was hired by a local health care system to evaluate the mental health of enrolled patients who requested lethal prescriptions under Oregon's newly implemented Death with Dignity Act. I drove to the trailer home of my first patient, a man in his sixties tethered to an oxygen tank for his chronic pulmonary disease who was recently diagnosed with advanced lung cancer. He told me about his abusive, alcoholic stepfather and how he left his family (...) and church at age sixteen, determined never again to be subjugated in any relationship. But in a life marked by an avoidance of intimate relationships, he corresponded regularly with his nephew and was proud to leave him a small inheritance. He shared with me his .. (shrink)

Frédéric Chopin is the epitome of the romantic artist; he had a chronic pulmonary disease that ultimately caused his death at the age of 39. An overlooked neurological condition is discussed in this paper. We consider the possibility of a temporal lobe epilepsy, as throughout his life Chopin had hallucinatory episodes, which can accompany seizure disorders.

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)