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)

An increasing number of older patients have to decide on a treatment plan for advanced chronic kidney disease, involving dialysis or conservative care. Shared decision-making is recommended as the model for decision-making in such preference-sensitive decisions. The aim of SDM is to come to decisions that are consistent with the patient’s values and preferences and made by the patient and healthcare professional working together. In clinical practice, however, SDM appears to be not yet routine and needs further (...) implementation. A shift from a biomedical to a person-centered conception might help to make the process more shared. Shared should, therefore, be interpreted as two persons bringing two perspectives to the table, that both need to be explored during the decision-making process. Starting from the patient’s perspective will enable to determine the mutual goals of care first and, subsequently, determine the best way for achieving those goals. To perform such SDM, the healthcare professional needs to become a skilled companion, being part of the patient’s relational context, and start asking the right questions about what matters to the patient as person. In this article, we describe the need for a person-centered conception of SDM for the setting of older patients with advanced CKD. (shrink)

HARWOOD L and CLARK AM. Nursing Inquiry 2012; 19: 29–38Understanding health decisions using critical realism: home-dialysis decision-making during chronic kidney diseaseThis paper examines home-dialysis decision making in people with Chronic Kidney Disease (CKD) from the perspective of critical realism. CKD programmes focus on patient education for self-management to delay the progression of kidney disease and the preparation and support for renal replacement therapy e.g.) dialysis and transplantation. Home-dialysis has clear health, societal and economic (...) benefits yet service usage is low despite efforts to realign resources and educate individuals. Current research on the determinants of modality selection is superficial and insufficient to capture the complexities embedded in the process of dialysis modality selection. Predictors of home-dialysis selection and the effect of chronic kidney disease educational programmes provide a limited explanation of this experience. A re-conceptualization of the problem is required in order to fully understand this process. The epistemology and ontology of critical realism guides our knowledge and methodology particularly suited for examination of these complexities. This approach examines the deeper mechanisms and wider determinants associated with modality decision making, specifically who chooses home dialysis and under what circumstances. Until more is known regarding dialysis modality decision making service usage of home dialysis will remain low as interventions will be based on inadequate epistemology. (shrink)

The bioethics literature has paid little attention to matters of informed reproductive decision-making among women of childbearing age who have chronic kidney disease (CKD), including women who are on dialysis or women who have had a kidney transplant. Women with CKD receive inconsistent and, sometimes, inadequate reproductive counseling, particularly with respect to information about pursuing pregnancy. We identify four factors that might contribute to inadequate and inconsistent reproductive counseling. We argue that women with CKD should receive (...) comprehensive reproductive counseling, including information about the possibility of pursuing pregnancy, and that more rigorous research on pregnancy in women with CKD, including women on dialysis or who have received a kidney transplant, is warranted to improve informed reproductive decision making in this population. (shrink)

The bioethics literature has paid little attention to matters of informed reproductive decision-making among women of childbearing age who have chronic kidney disease (CKD), including women who are on dialysis or women who have had a kidney transplant. Women with CKD receive inconsistent and, sometimes, inadequate reproductive counseling, particularly with respect to information about pursuing pregnancy. We identify four factors that might contribute to inadequate and inconsistent reproductive counseling. We argue that women with CKD should receive (...) comprehensive reproductive counseling, including information about the possibility of pursuing pregnancy, and that more rigorous research on pregnancy in women with CKD, including women on dialysis or who have received a kidney transplant, is warranted to improve informed reproductive decision making in this population. (shrink)

© 2015 NATCO, The Organization for Transplant Professionals.Despite the known benefits of kidney transplant, less than 30% of the 615 000 patients living with end-stage renal disease in the United States have received a transplant. More than 100 000 people are presently on the transplant waiting list. Although the shortage of kidneys for transplant remains a critical factor in explaining lower transplant rates, another important and modifiable factor is patients' lack of comprehensive education about transplant. The purpose of (...) this article is to provide an overview of known best practices from the broader literature that can be used as an evidence base to design improved education for ESRD patients pursuing a kidney transplant. Best practices in chronic disease education generally reveal that education that is individually tailored, understandable for patients with low health literacy, and culturally competent is most beneficial. Effective education helps patients navigate the complex health care process successfully. Recommendations for how to incorporate these best practices into transplant education design are described. Providing more ESRD patients with transplant education that encompasses these best practices may improve their ability to make informed health care decisions and increase the numbers of patients interested in pursuing transplant. (shrink)

Live donor kidney transplantation is the best treatment option for most patients with late-stage chronic kidney disease; however, the rate of living kidney donation has declined in the United States. A consensus conference was held June 5-6, 2014 to identify best practices and knowledge gaps pertaining to live donor kidney transplantation and living kidney donation. Transplant professionals, patients, and other key stakeholders discussed processes for educating transplant candidates and potential living donors about living (...) kidney donation; efficiencies in the living donor evaluation process; disparities in living donation; and financial and systemic barriers to living donation. We summarize the consensus recommendations for best practices in these educational and clinical domains, future research priorities, and possible public policy initiatives to remove barriers to living kidney donation. (shrink)

Boorse’s biostatistical theory states that diseases should be defined in ways that reflect disturbances of biological function and that are objective and value free. We use three examples from contemporary medicine that demonstrate the complex issues that arise when defining the boundaries of disease: polycystic ovary syndrome, chronic kidney disease, and myocardial infarction. We argue that the biostatistical theory fails to provide sufficient guidance on where the boundaries of disease should be drawn, contains ambiguities relating (...) to choice of reference class, and is out of step with medical processes for identifying disease boundaries. Although proponents of the biostatistical theory might regard these practical issues as irrelevant to the aim of providing a theoretical account of disease, we take them to indicate the need for a theoretical account that is adequate for current needs—including limiting new forms of medicalization that are driven by the identification of disease based on dysfunction. Our processes for determining the boundaries for disease need to recognize that there is no value-free method for making these decisions. (shrink)

Kidney transplantation is the most efficacious and cost-effective treatment for end-stage renal disease. However, the treatment’s accessibility is limited by a chronic shortage of transplantable kidneys, resulting in the death of numerous patients worldwide as they wait for a kidney to become available. Despite the implementation of various measures the disparity between supply and needs continues to grow. This paper begins with a look at the current treatment options, including various sources of transplantable kidneys, for end-stage (...) renal disease. We propose, in accordance with others, the introduction of compensated kidney donation as a means of addressing the current shortage. We briefly outline some of the advantages of this proposal, and then turn to examine several of the ethical arguments usually marshaled against it in a bid to demonstrate that this proposal indeed passes the ethics test. Using available data of public opinions on compensated donation, we illustrate that public support for such a program would be adequate enough that we can realistically eliminate the transplant waiting list if compensation is introduced. We urge a pragmatic approach going forward; altruism in living kidney donation is important, but altruism only is an unsuccessful doctrine. (shrink)

The concept of quality of life is the basis for a new paradigm of clinical medicine. Its assessment is considered to be an important instrument in determining disease severity and effectiveness of different treatment modalities. Our studies are devoted to the problem of diabetes complications especially anemia in patients with diabetic kidney disease. Anemia in subjects with diabetic nephropathy may result from various pathogenic factors including erythropoietin deficiency, iron deficiency, vitamin B12 and/or folate deficiencies, the effects of (...) proinflammatory cytokines etc. Diabetic patients with anemia are at increased risk of cardiovascular accidents and death. The aim of this study was to assess the influence of anemia on the quality of life of patients with early stages of diabetic nephropathy. We investigated 127 patients with type 2 diabetes mellitus and early diabetic nephropathy. Anemia was defined according to the World Health Organization criteria. Anemic patients were divided into three groups according to the stage of chronic kidney disease. Patients’ quality of life was assessed with SF-36 health survey. Anemic patients had lower scores of physical role functioning and emotional role functioning as compared to the patients with normal hemoglobin level, irrespective of the stage of chronic kidney disease. Patients with anemia and chronic kidney disease stage 3 had lower scores of general health perceptions, physical functioning, bodily pain, vitality and mental health than patients in the non-anemic group. Social role functioning was similar in anemic and non-anemic patients. The possible mechanisms and implications of the above mentioned findings are discussed with a medical and humanitarian perspective. The directions of further studies are proposed. (shrink)

Patients with end-stage renal disease experience significant mortality and morbidity, including cognitive decline. Advance care planning has been emphasized as a responsibility and priority of physicians caring for patients with chronic kidney disease in order to align with patient values before decision-making capacity is lost and to avoid suffering. This emphasis has proven ineffective, as illustrated in the case of a patient treated in our hospital. Is this ineffectiveness a consequence of failure in the courtroom or (...) the clinic? Through our own experience we affirm what has been written before: that legal precedent favors intensive treatment in virtually all cases without ‘clear and convincing evidence’ of a patient’s previously declared wishes to the contrary. Equally clear is that more than 20 years of support in the clinical literature suggesting advance care planning early in the course of disease can address challenges in the legal system for those lacking capacity. However, many physicians fail t... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Stories of Families with Chronically Ill Pediatric Patients during the War in UkraineVita VoloshchukFebruary 24th was a day that has left a mark in the memory and on the lives of every Ukrainian person. My husband and I work together [End Page E5] in a hospital. He had gone into work early to conduct a kidney transplant that had been scheduled for that day. Suddenly, whilst on my (...) way to work that morning, I heard a strange sound—it was an air-raid siren. Before that, I had never heard such a sound. I went through all the possible options of what it could be. Of course, watching the morning news had never been a habit either. The next thing that astonished me was that the taxi I had ordered was taking an unnaturally long time to turn up. When I got into the taxi, I noticed that the taxi driver was really upset and silent for half of the journey. He then said, “A war has begun...”“War? So? The war has been going on since 2014.”“You don’t understand,” he said. “Russia is launching missile attacks all over the territory of Ukraine; Russian troops are coming from the east and north of Ukraine. They want to capture the capital of Ukraine.” (Kyiv).Arriving at the hospital, I saw confused faces everywhere. The morning meeting began with a discussion of how we were to act in any possible situation that may occur. We were to discharge patients from the hospital, as many as possible. The arrangement of a bomb shelter began (although I didn’t even think that such a thing existed in our hospital), along with the strengthening of the hospital’s windows, and the increase of supplies such as medicine and food. Of course, the boy who expected a kidney transplant did not receive it because no one knew what to expect at any second or where a hostile Russian missile might hit, as Russian missiles hit not only military objects but residential buildings, hospitals, and memorials as well.Children who had to continue therapy remained in the hospital. As soon as we heard the sound of an air-raid siren, we had to go down into the bomb shelter. This happened 5-10 times per day. Families with palliative and chronically ill children began to call and ask for advice on how to proceed in such a situation. As many children were on artificial respiration devices, others needed oxygen therapy, and sputum of mucus from the upper respiratory tract. All this required uninterrupted power supplies and appropriate equipment. Later that day, a doctor from Poland called me and asked if our pediatric patients needed help, saying it would be better if they were moved to Poland, where they would be safer and have the correct equipment. We started organizing evacuations for chronically ill and palliative patients.Seven days after the war began, parents from other regions, where the situation was more dangerous, began calling, asking for help evacuating. The hospital began to work intensively round the clock. Some patients moved in, and others were evacuated abroad. Some did not want to go. They continued treatment in the hospital, which turned into a hub for patients who had come from more dangerous, occupied territories; patients who were forced to leave their motherland to continue treatment.Since the beginning of the war, I have been responsible for transferring palliative patients and other patients with gastrointestinal diseases abroad. After the massive invasion, everything changed in our country. It is important to say that during the war, Lviv is safer than any other Ukrainian city, still air-raid sirens often go off, and everyone needs to run immediately to shelters for their safety. Palliative patients need special care. It is very difficult to run with patients several times per day during an air-raid siren or live with these children for a long time (2-3 weeks) in shelters because of the explosions occurring around them.It is impossible to move some patients to safety because they need appropriate medical equipment or mechanical ventilation is necessary. In shelters, there are crowds, and the high risk of... (shrink)

This thesis examines the practice of haemodialysis and kidney transplantation, the two medical therapies available for persons with kidney failure, from a phenomenological perspective. A basic assumption made in the thesis is that contemporary biomedicine is deeply embedded in the cultural, historical, economic, and political circumstances provided by the particular local, national, and transnational contexts in which it is practiced. The aim of the thesis is twofold. On the one hand, the aim is to examine the forms of (...) person- and patienthood enacted and negotiated in haemodialysis and kidney transplantation care and in the daily lives of persons with kidney failure. On the other hand, the aim is to investigate the ways in which the enacted and negotiated forms of person- and patienthood are culturally embedded and normatively charged. In order to examine and investigate this twofold aim, an empirical material has been gathered that comprises observations and in-depth interviews with patients and caregivers at four haemodialysis units, one in Riga, Latvia, and three in Stockholm, Sweden. The theoretical approach and methodology of the study is cultural and phenomenological in character, drawing on an ethnological and anthropological understanding of culture as processual and relational, and on a phenomenological understanding of personhood as embodied and intertwined with the surrounding world. The thesis shows that patients’ encounters and attempts to deal with the diagnoses and treatments associated with kidney failure are complex and often misalign them with the normatively charged orientations enacted and recommended by medicine. The complex situation that emerges when they undergo transplantation, for example, stands in stark contrast to the widespread official view of organ transplantation as a self-evidently health-bringing and normalising therapy. Through their repeated and extensive experiences of undergoing haemodialysis and living with the disease, patients eventually become able to create a synthesis between their lived experiences of their own body and their body as a medical object – what in the thesis is called a ‘sick body’ – a synthesis that allows them to reorient themselves in life and experience a sense of direction. This process relies, to a large extent, on the temporal structure that haemodialysis affords life; it is by repeatedly undergoing the treatment that patients become able to create a sick body. Even so, many of them find this temporal structure problematic; they experience it as disruptive of their control and future-orientedness and as causing an existentially difficult-to-handle boredom. The thesis also shows that the political developments and the norms prevalent in the two national contexts studied greatly affect the orientations of the treatment practices and the participants’ lives. In both Riga and Stockholm, ideals of freedom, activity, control, and self-actualisation influence what forms of patienthood and personhood are enacted. The study indicates that persons who fall ill with a serious and chronic disease only gradually become able to understand and actively cope with their differently embodied circumstances of life. This suggests that medical professionals should not too hastily enlist their patients as experts on their own bodies, but rather provide them with the time and support necessary for making repeated attempts at creating and maintaining a life with a sick body. (shrink)

Background: Arthritis is very common but is not well understood. Actually, “arthritis” is not a single disease; it is an informal way of referring to joint pain or joint disease. There are more than 100 different types of arthritis and related conditions. People of all ages, sexes and races can and do have arthritis, and it is the leading cause of disability in America. More than 50 million adults and 300,000 children have some type of arthritis. It is (...) most common among women and occurs more frequently as people get older. Common arthritis joint symptoms include swelling, pain, stiffness and decreased range of motion. Symptoms may come and go. They can be mild, moderate or severe. They may stay about the same for years, but may progress or get worse over time. Severe arthritis can result in chronic pain, inability to do daily activities and make it difficult to walk or climb stairs. Arthritis can cause permanent joint changes. These changes may be visible, such as knobby finger joints, but often the damage can only be seen on X-ray. Some types of arthritis also affect the heart, eyes, lungs, kidneys and skin as well as the joints. Objectives: The main goal of this expert system is to get the appropriate diagnosis of disease and the correct treatment and give the appropriate method of treatment through several tips that concern the disease and how to treat it and we will see it through the application on the expert system. Methods: in this paper the design of the proposed Expert System which was produced to help Orthopedist in diagnosing Arthritis disease through its symptoms such as: pain on pressure in a joint , Inflammation indicated by joint swelling, Stiffness especially in the morning , Loss of flexibility of joint, Limited, joint movement, Deformity of the joints , Weight loss and fatigue , Non-specific fever and Crepitus. The proposed expert system presents an overview about Arthritis disease is given, the cause of diseases is outlined and the treatment of disease whenever possible is given out. SL5 Object Expert System language was used for designing and implementing the proposed expert system. Results: The proposed Arthritis disease diagnosis expert system was evaluated by Orthopedics students and they were satisfied with its performance. Conclusions: The Proposed expert system is very useful for Orthopedist, patients with arthritis and newly graduated Orthopedics students. (shrink)

Polycystic kidney disease (PKD) is one of the most prevalent causes of heritable renal failure. The disease is characterized by the occurrence of numerous fluid‐filled cysts within the parenchyma of kidney. The cysts are epithelial in origin and expand in size, leading to crowding of normal kidney tissue. Ultimately, there is gross enlargement of the kidneys with loss of normal functions, and death usually occurs because of complications related to renal failure. Animal models of polycystic (...) kidney disease are proving to be extremely useful for studying the molecular basis of renal cyst formation and for the isolation of genes carrying the mutations. This article describes the various animal models of polycystic kidney disease, spontaneously and experimentally derived, that have recently been identified. (shrink)

Renal replacement therapy is the indicated treatment for individuals with chronic kidney disease (CKD) to survive. However, not all sick people have access to the same treatment. This study compares renal care in two developing countries with different health systems. Specifically, it explores hemodialysis treatment from the perspective of low‐income individuals. A qualitative, comparative study was performed in Brazil and Mexico. Using purposive sampling, the research was based on open‐ended interviews with nineteen participants with kidney failure (...) undergoing hemodialysis treatment in public hospitals and ten relatives. According to our results, Brazilian participants perceived hemodialysis care as satisfactory because of health personnel courtesy as well as free access to dialysis treatment, prescription drugs, hospitalization and transportation. However, they reported deficiencies in the care they were receiving due to shortages of specialists, prescription drugs, laboratory tests and transportation. Mexican participants, in contrast, highlighted the catastrophic costs of medical care because they had no free access to renal therapy, nor adequate financial resources. Our findings suggest that low‐income Brazilian CKD sufferers experience renal care differently, as they are more satisfied and face less obstacles with hemodialysis compared with those of Mexico. More studies on the topic are needed. (shrink)

Overdiagnosis refers to diagnosis that does not benefit patients because the diagnosed condition is not a harmful disease in those individuals. Overdiagnosis has been identified as a problem in cancer screening, diseases such as chronic kidney disease and diabetes, and a range of mental illnesses including depression and attention deficit hyperactivity disorder. In this paper, we describe overdiagnosis, investigate reasons why it occurs, and propose two different types. Misclassification overdiagnosis arises because the diagnostic threshold for the (...) disease in question has been set at a level where many people without harmful disease are nonetheless diagnosed. We illustrate misclassification overdiagnosis using the example of chronic kidney disease. Misclassification occurs in diseases diagnosed using biomarkers or based on patient reported phenomena. Maldetection overdiagnosis arises because, at the time the diagnosis is made and despite the presence of a 'gold standard' diagnostic test, it is not possible to discriminate between harmful and non-harmful cases of the index disease. We illustrate maldetection overdiagnosis using the example of thyroid cancer. While there is some overlap between misclassification and maldetection overdiagnosis, this conceptual analysis helps to clarify the phenomenon of overdiagnosis and is a necessary first step in developing strategies to address the problem. (shrink)

BackgroundEnd-stage renal disease (ESRD) is the final stage of chronic kidney disease. Yet dialysis is not suitable for all ESRD patients. Moreover, while shared decision-making (SDM) is the prefer...

Chronic kidney failure is a serious somatic disease. Addressing the issue of living with a chronic disease means fully considering the patients’ entourage, their families, and those close to them, especially their children and spouses.Objectives: The present paper focuses on the couple’s psychological experience when one of them suffers from a chronic disease, in this instance kidney disease. In particular, how is the spouse affected by the treatment provided? The aim is (...) not only to see how care for sick people can be improved, but also, more specifically, how relatives and especially partners can receive attention.Methodology: A qualitative approach is not only adopted, being based on the psychotherapeutic follow-up of the partners of patients with chronic kidney disease, but also of the patients themselves, addressing the matter of their life as a couple. Three couples were considered, and two case studies are presented here. The issues that cut across these different situations are examined.Results and Discussion: Some couples show considerable resourcefulness. However, over the years, that capacity for adaptation and inventiveness can also be interrupted by the periods of greater suffering and even despair, especially when the somatic pathology becomes chronic. Many spouses talk about how living with a sick partner weighs down on them, causing severe fatigue. Some aspects of the illness can also become traumatic. The disease regularly disrupts the daily life of the couple and the family. This leads to a reworking of family relations. Each couple has its own history with the condition. As it emerges, it can disrupt the bonds of filiation, especially when the illness is hereditary. Making psychological care more accessible to the partners involved constitutes a major challenge for our hospital care systems. (shrink)

Background Trust is an essential phenomenon of relationship between patients and healthcare professionals and can be described as an accepted vulnerability to the power of another person over something that one cares about in virtue of goodwill toward the trustor. This characterization of interpersonal trust appears to be adequate for patients suffering from chronic illness. Trust is especially important in the context of chronic cardiovascular diseases as one of the main global health problems. Research Aim The purpose of (...) the qualitative study was to gain a deeper understanding of how people with chronic cardiovascular disease experience and make sense of trust in healthcare professionals. Research Design Eleven semi-structured interviews with participants analysed using interpretative phenomenological analysis to explore in detail their lived experience of trust as a relational phenomenon. Participants and Research Context Participants with chronic cardiovascular disease were purposively recruited from inpatients on the cardiology ward of the university hospital located in central Slovakia. Ethical Considerations The study was approved by the faculty ethics committee. Participants gave their written informed consent. Findings Four Interrelated Group Experiential Themes Sense of co-existence; Belief in competence; Will to help; Ontological security with eight subthemes were identified. The findings describe the participants' experience with trust in healthcare professionals as a phenomenon of close co-existence, which is rooted in the participants’ vulnerability and dependence on the goodwill and competence of health professionals to help with the consequence of (re)establishing a sense of ontological security in the situation of chronic illness. Conclusion Findings will contribute to an in-depth understanding of trust as an existential dimension of human co-existence and an ethical requirement of healthcare practice, inspire patient empowerment interventions, support adherence to treatment, and person-centred care. (shrink)

Background: A better understanding of the pattern of epidemic-related referrals to healthcare centers might allow the identification of vulnerabilities and the required changes that the healthcare management system should undergo. Objectives: This study aimed to investigate the COVID-19 referral pattern and the role of media and health management planning in changing the trends. Methods: Data extracted from the electronic medical database of Imam Khomeini Hospital Complex (IKHC), located in Tehran, Iran, from February 20 to June 4, 2020 were examined. Individuals (...) were divided into two groups, COVID-19 positive and negative. We used Google Trends to evaluate Google Internet search queries and also available policy documents, programs, and official news related to COVID-19 in Iran during the mentioned period. Results: In this study, 8647 individuals aged 46.05 ± 16.5 years were referred to IKHC. Approximately 57% were male, and 70% were COVID-19 positive. The most clinical symptoms were dyspnea, fever, cough, and myalgia. Chronic kidney disease (CKD) and type 2 diabetes mellitus were the most common underlying health conditions. In the first two weeks, the percentage of negative cases was higher than positive cases and then the pattern was reversed, when people searched for information about COVID-19 in media. Conclusions: Proper and timely information and education to people through the media and health management measures can be effective in reducing unnecessary visits to health centers, preventing the exhaustion of medical staff, and controlling the disease during epidemics. (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)

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)

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)

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)

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)

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)

For nearly five years, bioethicists and neurologists debated whether Jahi McMath, an African American teenager, was alive or dead. While Jahi's condition provides a compelling study for analyzing brain death, circumscribing her life status to a question of brain death fails to acknowledge and respond to a chronic, if uncomfortable, bioethics problem in American health care—namely, racial bias and unequal treatment, both real and perceived. Bioethicists should examine the underlying, arguably broader social implications of what Jahi's medical treatment and (...) experience represented. On any given day, disparities in the quality of health care and health outcomes for people of color in comparison to whites are evidenced in American hospitals and clinics. These disparities are not entirely explained by differences in patient education, insurance status, employment, income, expressed preference for treatments, and severity of disease. Instead, research indicates that, even for African Americans able to gain access to health care services and navigate institutional nuances, disparities persist across a broad range of services, including diagnostic screening and general medical care, mental health diagnosis and treatment, pain management, HIV‐related care, and treatments for cancer, heart disease, diabetes, and kidney disease. (shrink)

For a minority of children managed in the NICU, there is a need for more complex technologic assistance in order to sustain life, mitigate a more chronic debilitation from a pervasive life-limiting condition, or provide a bridge from life-sustaining therapy to a more semi-permanent treatment such as organ transplantation. This chapter will address two major types of technology assistance for infants and children—tracheostomy and assisted home ventilation, and dialysis—and the myriad complications and considerations that they raise. Some attention to (...) why clinicians may be so inclined to impose technology as a solution to life-limiting conditions will be noted, as well as why some parents may seem to insist on pursuing technology. (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)

Indigenous women are more likely to suffer from poor health than non-Indigenous women, usually with one long term condition or several chronic diseases at once. High psychological distress, asthma, eye problems, diabetes and heart disease are common and we are ten times more likely than non-Indigenous women to have kidney disease. Our life expectancy is sixty-three years compared to non-Indigenous women’s mortality rate of eighty-three years. The delivery of inclusive health services is thus an important part (...) of improving our life chances. However, even when such services are provided Indigenous women are reluctant to use them. In this article I discuss some of the impediments to the use of such services by considering how Indigenous women configure space and place in their everyday encounters within a health provision context. (shrink)