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)

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)

The aim of this study was to validate the Polish adaptation of the Treatment Self-Regulation Questionnaire, which measures the degree of self-determination in risk behaviour changes. The study comprised 219 patients, beginning to undergo treatment. The Global Motivation Scale was used to test a convergent validity. The confirmatory factor analysis did not support the theoretical four-factor model, thus an exploratory analysis was conducted to determine an optimal model across risk behaviours. The adopted two-factor model matched original TSRQ subscales: autonomous (...) motivation and external regulation. The internal consistency of factors ranging from.78 to.89. Structural equation modeling revealed the impact of global motivation on contextual motivation, limited to the equivalent type of regulation. The action aimed at supporting patient’s autonomy should consider the particular behaviour and the global motivation as a resource in disease. (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)

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)

Non-communicable diseases disproportionately affect low and middle-income countries where nearly three quarters of NCD deaths occur. Bangladesh is also in NCD burden. This cross-sectional study was done on 50 health facilities centres at Gazipur district in Bangladesh from July 2015 to December 2015 to introduce SARA for better monitoring and evaluation of non-communicable diseases health service delivery. The General Service readiness index score was 61.52% refers to the fact that about 62% of all the facilities were ready to provide general (...) services like basic amenities, basic equipment, standard precautions for infection prevention, and diagnostic capacity and essential medicines to the patients. But in case of non-communicable diseases, among all the health facilities 40% had chronic respiratory disease and cardiovascular diseases diagnosis/ management and only 32% had availability of diabetes diagnosis/management. Overall readiness score was 52% in chronic respiratory disease, 73% in cardiovascular disease and 70% in diabetes. Therefore, service availability and readiness of the health facilities to provide NCD related health services were not up to the mark for facing future targets. A full-scale census survey of all the facilities of the study area would give a better understanding of the availability and service readiness. (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)

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)

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)

Chronic migraine is a difficult disease to diagnose, and its pathophysiology remains undefined. Its symptoms affect the quality of life and daily living tasks of the affected person, leading to momentary disability. This is a pilot, randomized, controlled, double-blind clinical trial study with female patients between 18 and 65 years old with chronic migraine. The patients underwent twelve mindfulness sessions paired with anodal transcranial direct-current stimulation over the left dorsolateral prefrontal cortex, with current intensity of 2 mA (...) applied for 20 min, three times a week for 4 weeks. In addition, 20 min of mindfulness home practices were performed by guided meditation audio files. A total of 30 participants were evaluated after the treatment, and these were subdivided into two groups—active tDCS and sham tDCS, both set to mindfulness practice. The FFMQ-BR, MIDAS, and HIT-6 questionnaires were used to evaluate the outcomes. After the treatment, the active mindfulness and tDCS group showed better results in all outcomes. The sham group also showed improvements, but with smaller effect sizes compared to the active group. The only significant difference in the intergroup analysis was the outcome evaluated by HIT-6 in the post treatment result. Our results provide the first therapeutic evidence of mindfulness practices associated with left DLPFC anodal tDCS with a consequent increase in the level of full attention and analgesic benefits in the clinical symptoms of patients with chronic migraine. (shrink)

BackgroundPatient skepticism concerning medical innovations can have major consequences for current public health and may threaten future progress, which greatly relies on clinical research.The primary objective of this study is to determine the variables associated with patient acceptation or refusal to participate in clinical research. Specifically, we sought to evaluate if distrust in pharmaceutical companies and associated psychosocial factors could represent a recruitment bias in clinical trials and thus threaten the applicability of their results.MethodsThis prospective, multicenter survey consisted in the (...) administration of a self-questionnaire to patients during a pulmonology consultation. The 1025 questionnaires distributed collected demographics, socio-professional and basic health literacy characteristics. Patients were asked to rank their level of trust for pharmaceutical companies and indicate their willingness to participate in different categories of research.Logistic regression was used to determine factors contributing to “trust” versus “distrust” group membership and willingness to participate in each category of research.ResultsOne thousand patients completed the survey, corresponding to a response rate of 97.5%. Data from 838 patients were analyzed in this study.48.3% of respondents declared that they trusted pharmaceutical companies, while 35.5% declared distrust. Being female, inactive in the employment market, and not-knowing the name of one’s disease are factors related to declared distrust. Distrust-group membership is associated with unwillingness to participate in certain categories of trials such as pre-marketing and industry-sponsored trials.ConclusionDistrust in pharmaceutical companies is associated with a specific patient profile and with refusal to participate in certain subcategories of trials. This potential recruitment bias may explain the under-representation of certain categories of patients such as women in pre-marketing drug trials. (shrink)

“Exercise starts and ends in the brain”: this was the title of a review article authored by Dr. Bengt Kayser back in 2003. In this piece of work, the author highlights that pioneer studies have primarily focused on the cardiorespiratory-muscle axis to set the human limits to whole-body exercise tolerance. In some circumstances, however, exercise cessation may not be solely attributable to these players: the central nervous system is thought to hold a relevant role as the ultimate site of exercise (...) termination. In fact, there has been a growing interest relative to the “brain” response to exercise in chronic cardiorespiratory diseases, and its potential implication in limiting the tolerance to physical exertion in patients. To reach these overarching goals, non-invasive techniques, such as near-infrared spectroscopy and transcranial magnetic stimulation, have been successfully applied to get insights into the underlying mechanisms of exercise limitation in clinical populations. This review provides an up-to-date outline of the rationale for the “brain” as the organ limiting the tolerance to physical exertion in patients with cardiorespiratory diseases. We first outline some key methodological aspects of neuromuscular function and cerebral hemodynamics assessment in response to different exercise paradigms. We then review the most prominent studies, which explored the influence of major cardiorespiratory diseases on these outcomes. After a balanced summary of existing evidence, we finalize by detailing the rationale for investigating the “brain” contribution to exercise limitation in hitherto unexplored cardiorespiratory diseases, an endeavor that might lead to innovative lines of applied physiological research. (shrink)

BackgroundMental stress and imbalance of its two neural stress systems, the autonomic nervous system and the hypothalamic–pituitary–adrenal axis, are associated with chronic prostatitis/chronic pelvic pain syndrome and erectile dysfunction. However, the comprehensive analyses of psychological stress and stress systems are under-investigated, particularly in CP/CPPS patients complicated by lower urinary tract symptoms and ED.Materials and methodsParticipants were 95 patients in CP/CPPS+ED group, 290 patients in CP/CPPS group, 124 patients in ED group and 52 healthy men in control group. The (...) National Institutes of Health Chronic Prostatitis Symptom Index, the International Index of Erectile Function-5 and the International Prostate Symptom Score were used for assessing the disease severity of CP/CPPS, LUTS and ED. Psychometric self-report questionnaires including the Beck Anxiety Inventory, Perceived Stress Scale, Type A Personality Test and Symptom Checklist 90 were completed for distress from physical symptoms. Twenty-five subjects per group were randomly selected for further investigating the changes of the HPA axis and ANS. Saliva samples were taken on 3 consecutive days at 8 specific times with strict reference to time of morning awakening for evaluation of free cortisol. Heart rate variability as marker of the ANS was measured using 24 h electrocardiography, and time-and frequency-domain variables were analyzed.ResultsThe BAI and SCL-90 scores were significantly higher in the CP/CPPS+ED, CP/CPPS and ED groups compared with the control group. The PSS scores of both groups with ED were significantly higher than the control group. Compared with the CP/CPPS group, the differences of PSS, SCL-90 and TAPT scores were statistically significant in CP/CPPS+ED patients. The IPSS scores were shown to have significantly positive correlations with BAI, PSS and SCL-90 in the CP/CPPS patients. However, in all subjects, the IIEF-5 scores were shown to have significantly negative correlations with BAI, PSS, SCL-90 and quality of life score in NIH-CPSI. Cortisol awakening response parameters and diurnal cortisol levels did not significantly vary between the four groups. Time-dependent parameters of HRV also did not differ significantly across groups. In the frequency domain analysis, low frequency was significantly lower in ED patients when compared with CP/CPPS+ED patients and healthy controls, high frequency power was significantly higher in healthy controls compared to patients with ED, CP/CPPS and CP/CPPS+ED, and the CP/CPPS+ED group had significantly higher LF/HF ratio than the control group.ConclusionCP/CPPS and ED patients score exceedingly high on most psychosocial variables. The symptom scores of LUTS and ED positively correlate with the severity of psychological stress. Our findings also suggest that the ANS sympathovagal imbalance is associated with ED and LUTS in CP/CPPS, whereas HPA axis activity is not. (shrink)

Background Rare diseases are generally poorly understood from scientific and medical standpoints due, to their complexity and low prevalence. As a result, individuals living with rare diseases struggle to obtain timely diagnoses and suitable care. These clinical difficulties add to the physical and psychological impacts of living with chronic and often severe medical conditions. From the standpoint of pragmatist ethics, the morally problematic situations that adults living with rare diseases experience matter crucially. However, there is little known about these (...) experiences.Methods A survey study was conducted with 121 adults living with rare diseases in Québec, Canada, to identify morally problematic situations encountered in the healthcare system and everyday life as part of a participatory action research project. Morally problematic situations elicited internal tensions and constraints to agency.Results Adults living with rare diseases experienced morally problematic situations of stigmatization, disbelief, and sometimes abuse in the healthcare system. These situations were compounded by diagnostic delays, inadequate care, and suboptimal follow-up, and led some individuals to opt-out of medical care. In their personal lives, these individuals sometimes found themselves in situations of physical and financial dependency. They often also had to give up professional occupations, academic training, or life projects.Conclusions Adults living with rare diseases experience important morally problematic situations navigating the healthcare system and their everyday lives, some of which could be alleviated through interventions developed through future participatory action research. (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)

Hello readers! Hope everyone is fine especially in this season where we often are prone to attacks of cold or flu. The holiday season is at our threshold, and we wish everyone to be in the best of health and happiness.This issue of the BJB is very interesting with topics stretching from Non Communicable Diseases to the ethical issues related to the habitation of the planet Mars, and proves how forward looking are our readers and authors.Mohammad Rashedul Islam et al (...) discuss the application of the SARA method in a district in Bangladesh. The method is based on the principle of Service Availability and Readiness Assessment of WHO. The study in a district in Bangladesh found that about 62% of all the facilities were ready to provide general services like basic amenities with basic equipment, standard precautions for infection prevention, diagnostic capacity and essential medicines. However in case of Non-Communicable Diseases (NCD), only 40% of the health facilities had chronic respiratory disease and cardiovascular diseases diagnosis/management and only 32% had availability of diabetes diagnosis/management. Therefore, service availability and readiness of the health facilities to provide NCD related health services were not satisfactory. The authors emphasize that SARA which is a tool to monitor facilities to be ready for provision of services including NCD, should be used by all clinic managers.The very scientific and forward looking article titled “SCNT Method and the Application for Patent Eligibility on Cloned Animals” by Norman K. Swazo reviews US federal court decisions regarding applications for patent in the case of live-born animal clones. A decision issued from the United States Court of Appeals for the Federal Circuit established an earlier decision of the Patent Trial and Appeal Board that live-born animals cloned by the somatic cell nuclear transfer method (SCNT) like cattle, sheep, pigs, and goats are not patentable, so a scientist using the method is not eligible for a patent claim on the animals. The author feels that this decision has ethical implications related to the moral status of cloned animals. The author argues whether the end product of a SCNT (somatic cell nuclear transfer) application is same as an invention or only a revelation of nature at the cellular level. The author quotes Article 11 of Universal Declaration on the Human Genome and Human Rights UNDHGR “Practices which are contrary to human dignity, such as reproductive cloning of human beings, shall not be permitted.” He concludes that the judicial assessments in the USA deciding on the question of patenting of animal clones provide important barriers to human reproductive cloning research, safeguarding moral and legal commitment to human dignity. The article on Ethics in Public Health Research and Clinical Research by Muhammad Waseem Khanet al discusses on the need to continue to focus on ethical values in conducting any research. Tha authors stress the importance, either in public health research or clinical research, of the need to recognize an ethical standard that respects individual’s autonomy and community’s wellbeing. This can be achieved through collective collaboration for the protection of individual’s autonomy, dignity and wellbeing. Research ethics is a fundamental criterion to be complied with throughout a research study. The very interesting article on Planetary Protection for Mars: Time for Reconsideration by Svetoslav Alexandrov looks into the ethical questions beyond mother earth but which could be affected by people from our planet. In this manuscript the author discusses the ethics of the protection of hypothetical organisms on Mars in terms of planned manned space missions and subsequent colonization. The author discusses the possible problems related to a process called terraformation where the planet is converted to make it suitable for Earth life. He argues that terraformation will change the whole condition of the planet. The author quotes Carl Sagan, of The Planetary Society: “If there is life, then I believe we should do nothing to disturb that life. Mars then, belongs to the Martians, even if they are microbes”. I think we all agree with this brilliant recommendation.The article ‘We Still Need to Improve Our Research Writing Ethics’ by Sheikh Arslan Sehgal looks into the value of maintaining professional integrity of research work. Particularly with issues like plagiarism, ethics, authorship and data fabrication. He argues that the scientific community must obey the scientific ethical norms and rules. He feels that ethical problems must be resolved for the advancement of research in countries including Pakistan. The author recommends teaching students the international, institutional and professional standards regarding research and authorship issue. Thus from the beginning researchers will know the key components of ethics in conducting research and the end product will be research work of quality and acceptability.Dear Readers, we look forward to your articles, commentaries, observations on different issues which touch our lives and will help in broadening our knowledge and understanding of Bioethics. (shrink)

Modelling of contagious disease usually employs compartmental SEIR-like models where the waiting times in respective compartments are exponentially distributed. In this paper, we are interested in investigating how the distributions of sojourn times in infective compartments affect the dynamics and persistence of the contagious bovine pleuropneumonia, a chronic respiratory disease of cattle. Two kinds of extreme distributions of the sojourn times are considered: a Dirac delta-function and truncated Gaussian function leading to a model with (non-constant) delay (...) and the classical exponential distribution that stands for a model without delay. Expressions of the basic reproductive numbers are derived and dynamical behaviours are discussed for the three models. It is found that the spreading of disease exhibits wave-like oscillations for the time-delay dynamics. In contrast, the disease appears to last longer when the spreading is described by the classical dynamics without delay. Subsequently, the time-delay dynamics turns out to be more appropriate for the description of an experimental epidemic of CBPP. (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)

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)

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)

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)

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)

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)

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)

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)

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)

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)

Chronically ill conditions are particularly difficult to manage because of their impact both on the social and on the corporal sphere to such an extent as to involve a series of problems that negatively alter the quality of life of affected patients. Chronicity has also a considerable ef-fect on social capital. In the current literature, it is known that social capital may contribute to a range of advantages to people health. Chronic Venous Disease (CVD) includes several pathologi-cal alterations (...) of the venous system of the lower limbs that cause a wide range of symptoms and signs. The aim of this study is to explore, with a qualitative approach, the dynamics of social cap-ital within people's experience of CVD and describe the roles of family and friends and the health care system. The method used is based on face-to-face semistructured interviews was performed, following the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. Six-teen patients were included: 11 women and 5 men. The results obtained are completely in line with the current literature, which shows a certain difficulty in terms of daily activities, pain management; work-related difficulties; non-coverage of healthcare costs for medications and drugs prescribed. In the context of social capital, the bonding social capital of the patients inter-viewed was more positively perceived in the role of CVD management than by the patients' fami-lies. Another interesting result concerns the total absence of knowledge of patient associations with CVD. Thus, alongside the biographical destruction that CVD entails, there is evidence of the scarce relevance and presence of health policies capable of improving the quality of life of these people not only from a social and medical point of view but also from an economic point of view. (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)

Born at 24 weeks gestation, Baby G now lies in a neonatal intensive care unit two months post-birth. He has pulmonary hypoplasia, congenital scoliosis, and swallowing issues that will require placement of a feeding tube, and bowel dystonia that interferes with his ability to absorb feedings. Shortly after birth, he experienced a cardiopulmonary arrest and now has obvious neurological impairments. As a result of incomplete development of his lungs and severe chronic lung disease, he cannot breathe on his (...) own. Because of his chronic respiratory failure, tracheostomy and long-term assisted ventilation was offered as an option that would allow him to be discharged from the acute care setting. However, his congenital.. (shrink)

Health literacy is a contemporary term used in health services, often used to describe individuals requiring additional support to access, understand and implement health service information. It is used as a measure of self‐efficacy in chronic disease models of care such as the nurse navigator service. The aim of the research was to investigate the concept of health literacy in the nurse navigator service, particularly in relation to the defined role objective of person‐centred care. Fairclough's critical discourse analysis (...) was used to analyse the experiential, relational and expressive elements of texts, investigating the hidden truths which are represented in discourse. Texts from a variety of health service micro‐, meso‐ and macro‐hierarchical sources were selected for analysis using the nurse navigator evaluation data set and other associated texts. Health literacy in the nurse navigator service is a technology of government used to increase participation of individuals in their own health and well‐being. The discourse suggests that health literacy responsibilises both individuals and nurses and is discursively formed within a matrix of rational choice. In this context, health literacy contributes to structural vulnerability. (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)