Critical congenital heart disease screening is rapidly becoming the standard of care in the United States after being added to the Recommended Uniform Screening Panel in 2011. Newborn screens typically do not require affirmative parental consent. In fact, most states allow parents to exempt their baby from receiving the required screen on the basis of religious or personally held beliefs. There are many ethical considerations implicated with allowing parents to exempt their child from newborn screening for CCHD. (...) Considerations include the treatment of religious exemptions in our current legal system, as well as medical and ethical principles in relation to the rights of infants. Although there are significant benefits to screening newborns for CCHD, when a parent refuses for religious or personal beliefs, in the case of CCHD screening, the parental decision should stand. (shrink)

The present study examined deep gray matter perfusion in neonates with congenital heart disease (CHD) with arterial spin labeling magnetic resonance imaging preoperatively. We found that neonates with cyanotic CHD showed lower right thalamus compared with controls and lower right basal ganglia perfusion compared with acyanotic CHD. When the CHD group was assessed as a whole, it showed slightly decreased left thalamus perfusion compared with controls. The results suggest that cardiac physiology plays a crucial part in changes (...) in regional cerebral perfusion. Perfusion with arterial spin labeling may be a useful marker of high risk for impaired cerebral blood flow auto-regulation and cerebral hypoperfusion in neonates with CHD. (shrink)

Why must critical congenital heart disease (CCHD) screening be legislated? This was my first reaction to Hom and colleagues' (2016) analysis. As the authors explain, pulse oximetry is painless and...

Decision-making regarding treatment for newborns with disabilities in resource-poor settings is a difficult process that can put parents and caregivers in conflict. Despite several guidelines that have helped to clarify some of the medical decision-making in Ghana, there is still no clear consensus on the specific moral criteria to be used. This article presents the case of a mother who expressed her wish that her child with Down syndrome should not have been resuscitated at birth. It explores the ethical issues (...) at stake in both her misgivings about the resuscitation and her unwillingness to consider surgical repair of an atrioventricular (AV) canal defect. Knowing that children born with Down syndrome are able to pursue life’s goals, should our treatment of complete AV canal defect in such children be considered morally obligatory, even in resource-poor settings like Ghana? (shrink)

Phenomenology has contributed to healthcare by providing resources for understanding the lived experience of the patient and their situation. But within a burgeoning literature on the characteristic features of illness, there has not yet been an account appropriate to describe congenital illnesses: conditions which are present from birth and cause suffering or medical threat to their bearers. Congenital illness sits uncomfortably with standard accounts in phenomenology of illness, in which concepts such as loss, doubt, alienation and unhomelikeness presuppose (...) prior health. These accounts reflect, in different ways, Maurice Merleau-Ponty’s assumption that the ways of living of the ill contain allusions to fundamental, healthy functions. The originality of congenital illness complicates this assumption and demands its own original phenomenology. In this paper, I sketch my personal experience living with a single-ventricle heart condition. While some of this story may reflect my own idiosyncratic experience, I hope that much of it will resonate with the congenital illness experience. I argue that the phenomenological literature on illness, grounded in the notion of loss, does not describe the congenital illness experience. I show how a number of other patient-centred theories of health and illness which have been influential on phenomenology can and cannot elucidate congenital illness. In particular, I consider Georges Canguilhem’s account of the normal and the pathological; debates in disability; and the notion of illness as biographical disruption. I show that congenital illness results in the preadmission of its patients to a paradoxical logic of medical palliation, one product of which is existential maturity. (shrink)

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

Written by cardiac surgeons, cardiologists, and pediatric intensive care physicans and nurses, this text offers a multidisciplinary approach to the care of children with critical heart disease. Throughout, Dr. Nichols and colleagues provide practice-oriented guidance on: * scientific principles * diagnostic and therapeutic techniques * specialized equipment * managing congenital and acquired special conditions * anesthesia, CPR, and respiratory care...... all with more than 400 illustrations to help you visualize anatomy and techniques, numerous charts and tables to (...) summarize critical data, and much more. (shrink)

Heart disease is a complex condition that is a leading cause of death worldwide. It is often seen as a disease of affluence, yet is strongly associated with a gradient in socio-economic status. Its highly complex causality means that many different facets of social and economic life are implicated in its aetiology, including factors such as workplace hierarchy and agricultural policy, together with other well-known factors such as what passes for individual 'lifestyle'. The very untangling of causes (...) for heart disease thus inevitably raises social, moral and political issues. These include the proper role of the individual and of larger social forces in its aetiology, prevention and treatment. The construction of risk factors for heart disease likewise is enmeshed with questions of distributive justice in the responsible targeting of those at risk for heart disease, a debate which has received much overt attention in the medical literature, but less attention within the ethical literature. Strategies for addressing a condition of such complex causality can be highly diverse, from pharmaceutical to social interventions, and value issues attach to the choice and presentation of such strategies. For example, prevention strategies may raise complex issues of responsibility and of judgements of what it is to 'live well'. Further ethical debate on this highly political disease would be welcome. (shrink)

When should doctors seek protective custody to override a parent’s refusal of potentially lifesaving treatment for their child? The answer to this question seemingly has different answers for different subspecialties of pediatrics. This paper specifically looks at different thresholds for physicians overriding parental refusals of life-sustaining treatment between neonatology, cardiology, and oncology. The threshold for mandating treatment of premature babies seems to be a survival rate of 25–50%. This is not the case when the treatment in question is open (...) class='Hi'>heart surgery for a child with congenital heart disease. Most cardiologists would not pursue legal action when parents refuse treatment, unless the anticipated survival rate after surgery is above 90%. In pediatric oncology, there are case reports of physicians requesting and obtaining protective custody for cancer treatment when the reported mortality rates are 40–50%. Such differences might be attributed to differences in care, a reasonable prioritization of quality of life over survival, or the role uncertainty plays on prognoses, especially for the extremely young. Nonetheless, other, non-medical factors may have a significant effect on inconsistencies in care across these pediatric subspecialties and require further examinations. (shrink)

Myocardial disarray is the screening tool for HCM (hypertrophy cardiomyopathy). It is also found in hypertension, congenital heart disease, corpulmonale, etc. Many patients died from heart failure due to myocardial disarray. The risk of premature death may be determined by the degree of myocyte disarray. This article reviews the anatomical explanation of myocardial disarray. It also discusses the pathogenesis of the myocardial disorganization that causes heart failure. How to measure myocardial disarray has also been assessed. (...) Therefore, early detection of myocardial disarray is advised to prevent heart failure. (shrink)

The Health (Regulation of Termination of Pregnancy) Act 2018 was commenced on 01/01/2019 in Ireland. The Act provides for legal termination of pregnancy under defined circumstances including for any reason at < 12 weeks gestation; and where two doctors agree there is ‘a condition affecting the foetus that is likely to lead to the death of the foetus either before, or within 28 days of, birth’. As such, abortion for congenital anomaly (CA) can occur at a number of time (...) points, depending on the adjudged severity. Infants born with CAs frequently require significant medical intervention and account for a high proportion of admissions to paediatric intensive care units (PICUs). The purpose of this paper was to evaluate the number of infants with CAs admitted to an Irish PICU in the period before and after the implementation of the Act. All PICU admissions < 1 month of age to a single Irish paediatric hospital between 2012 and 2021 were analysed. CAs were recorded, and the periods before and after the commencement of the Act compared. We found a difference in admissions involving CAs, particularly those related to congenital heart disease involving single ventricle anatomy. It is plausible that this difference was as a result of improved access to abortion services following the implementation of the Act. This article explores the legal conditions related to the abortion of a foetus with a CA in Ireland, and the possible impact of the Independent Review of the Operation of the Health ( Regulation of Termination of Pregnancy) Act 2018. (shrink)

Aggressive medical and surgical interventions have not been clearly demonstrated to improve survival in neonates with trisomy 18; there are no data that demonstrates improved quality of life for these children after these interventions; and these interventions are clearly associated with significant morbidity, resource allocation, and cost.

ABSTRACT The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study (the RHDGen network) in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were (...) conducted with RHDGen participants (n = 18), study staff (n = 5) and with individuals who refused to participate (n = 3). In general, broad consent was seen to be reasonable if reasons for storing the samples for future research use were disclosed. Some felt that broad consent should be restricted by specifying planned future studies and that secondary research should ideally relate to original disease for which samples were collected. A few participants felt that broad consent would delay the return of research results to participants. This study echoes findings in other similar studies in other parts of the continent that suggested that broad consent could be an acceptable consent model in Africa if careful thought is given to restrictions on re-use. (shrink)

The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with RHDGen participants, (...) study staff and with individuals who refused to participate. In general, broad consent was seen to be reasonable if reasons for storing the samples for future research use were disclosed. Some felt that broad consent should be restricted by specifying planned future studies and that secondary research should ideally relate to original disease for which samples were collected. A few participants felt that broad consent would delay the return of research results to participants. This study echoes findings in other similar studies in other parts of the continent that suggested that broad consent could be an acceptable consent model in Africa if careful thought is given to restrictions on re-use. (shrink)

BackgroundCoronary heart disease is closely associated with cognitive impairment, especially in severe cases of heart failure. However, it is unclear whether cardiac systolic function plays a role in the relationship between pre-existing CHD and cognitive impairment in subjects without clinical heart failure.MethodsIn total, 208 subjects from the First Affiliated Hospital of Xi’an Jiaotong University were recruited from June 2014 to January 2015, and were divided into CHD and non-CHD groups according to the inclusion and exclusion criteria. (...) The global cognitive function of all subjects was assessed by the Mini-Mental State Examination and cognitive impairment was defined as the score lower than the cutoff value. Left ventricular ejection fraction was measured using transthoracic echocardiograms. The relationship among pre-existing CHD, LVEF, and cognitive impairment was analyzed by multivariate logistic regression.ResultsIn total, 34 subjects met the criteria of cognitive impairment. Univariate analysis showed that the cognitive impairment prevalence in the CHD group was significantly higher than that in the non-CHD group. Multivariate logistic analysis revealed that CHD was significantly associated with a higher risk of cognitive impairment after adjusting for confounds except for LVEF. However, the OR of CHD decreased when LVEF was further corrected as a continuous variable, and LVEF was negatively associated with the risk of cognitive impairment.ConclusionPre-existing CHD is associated with a higher risk of cognitive impairment, and such an association can be considerably explained by reduced LVEF. An impaired cardiac systolic function may play a key role in the relationship between CHD and cognitive impairment among patients with pre-heart failure conditions. (shrink)

ABSTRACT The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study (the RHDGen network) in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were (...) conducted with RHDGen participants (n = 18), study staff (n = 5) and with individuals who refused to participate (n = 3). In general, broad consent was seen to be reasonable if reasons for storing the samples for future research use were disclosed. Some felt that broad consent should be restricted by specifying planned future studies and that secondary research should ideally relate to original disease for which samples were collected. A few participants felt that broad consent would delay the return of research results to participants. This study echoes findings in other similar studies in other parts of the continent that suggested that broad consent could be an acceptable consent model in Africa if careful thought is given to restrictions on re-use. (shrink)

This article uses Betty Friedan’s idiosyncratic invocations of heart disease in her work from the 1960s through the 1990s, as well as her autobiographical comments about it and her theory of the feminine mystique, to grapple with a feminist articulation of heart disease. Although this leading cause of death for women in industrialized countries has been peripheral to feminist health discourse and most women’s preoccupations, heart disease played an interesting narrative role in Friedan’s work (...) and life. Drawing on Friedan’s unconventional philosophy of health provides an opportunity to problematize health awareness and reconsider the role of disease and health in feminist critique more generally. As we try to understand gendered stories of disease that are emerging at the dawn of the 21st century, rereading Friedan can help illuminate the limits, possibilities and dangers of framing heart disease as a ‘women’s health issue’. (shrink)

Heart disease is the deadliest disease and one of leading causes of death worldwide. Machine learning is playing an essential role in the medical side. In this paper, ensemble learning methods are used to enhance the performance of predicting heart disease. Two features of extraction methods: linear discriminant analysis and principal component analysis, are used to select essential features from the dataset. The comparison between machine learning algorithms and ensemble learning methods is applied to selected (...) features. The different methods are used to evaluate models: accuracy, recall, precision, F-measure, and ROC.The results show the bagging ensemble learning method with decision tree has achieved the best performance. (shrink)

Psychological distress, including depression and anxiety, and Type-D personality are prevalent in patients with coronary heart disease and associated with poor cardiovascular outcomes. Worry and rumination may be among the core features responsible for driving psychological distress in these patients. However, the nature of associations between these constructs remains to be delineated, yet they may have implications for the assessment and treatment of CHD patients. This study aimed to explore the factorial structure and potential overlap between measures of (...) depression, anxiety and the Type-D personality factors known as negative affectivity and social inhibition, and examine how these constructs relate to worry and rumination in a sample of 1,042 CHD outpatients who participated in the in the cross-sectional NORwegian CORonary Prevention study. We conducted confirmatory factor analyses and regression analyses within a structural equation modeling framework. Results showed all constructs to have acceptable factor structure and indicated an overlap between the constructs of depression and negative affectivity. Worry was most strongly associated with anxiety, whereas rumination was most strongly associated with depression and negative affectivity. The results suggest conceptual similarities across the measures of depression and negative affectivity. They further suggest that intervention efforts could benefit from targeting worry and/or rumination in the treatment of CHD outpatients presenting with symptoms of psychological distress. (shrink)

SummaryThe variability of three behavioural risk factors for heart disease—heavy alcohol and tobacco consumption and physical inactivity—was assessed in an Australian Aboriginal community, where heart disease death rates were high. Prevalence levels were assessed by comparison with those experienced by all adult Australians and by evaluating whether Aboriginal rates were influenced by underlying sociodemographic conditions. Relative risk ratios, odds ratios and logistic regression analysis were used.A total of 159 males and 114 females participated. Compared to all (...) Australians, Aborigines are significantly more likely to drink five or more drinks on a drinking day, to be current smokers, and not to participate in vigorous exercise. In the Aboriginal community, univariate analysis indicates that: the odds of being a heavy drinker are significantly higher for those in unsatisfactory health; odds of being a current smoker are significantly higher for those in unsatisfactory health or unemployed; odds of not participating in vigorous exercise are significantly higher for those in unsatisfactory health, unemployed or without secondary education. Multivariate analysis shows that risk of being a heavy drinker is independently associated with sex, age, and health status; risk of being a current smoker is associated with health and employment status. The risk of not participating in vigorous exercise is significantly related to all sociodemographic variables examined. Reasons for these associations are discussed. (shrink)

The relationship between law and a population’s health is complex and poorly understood. To the extent that scholarship exists on the subject, it has usually focused on epidemics that are concentrated in relatively vulnerable, marginalized communities. Often, individual behaviors are assumed to play a major role in the epidemiology of these diseases. Perhaps, as a result, these illnesses become stigmatized and the object of coercive laws, which in turn become the subject of litigation, legal debate, and ultimately scholarly analysis. Thus, (...) to the extent that U.S. legal scholars have thought about public health in the last 30 years, they have generally done so in the context of tuberculosis, intravenous drug abuse, and a handful of similar conditions. Likewise, Jonathan Mann’s own appreciation of the importance of human rights to public health emerged in the wake of his work with HIV, which is perhaps the prototypical stigmatized disease. (shrink)

The relationship between law and a population’s health is complex and poorly understood. To the extent that scholarship exists on the subject, it has usually focused on epidemics that are concentrated in relatively vulnerable, marginalized communities. Often, individual behaviors are assumed to play a major role in the epidemiology of these diseases. Perhaps, as a result, these illnesses become stigmatized and the object of coercive laws, which in turn become the subject of litigation, legal debate, and ultimately scholarly analysis. Thus, (...) to the extent that U.S. legal scholars have thought about public health in the last 30 years, they have generally done so in the context of tuberculosis, intravenous drug abuse, and a handful of similar conditions. Likewise, Jonathan Mann’s own appreciation of the importance of human rights to public health emerged in the wake of his work with HIV, which is perhaps the prototypical stigmatized disease. (shrink)

Hospitalization is a unique health-illness transition for most elderly people. Whether the patient's health-related needs are met or not often iiifluence his or her appraisal of quality of life during hospitalization. This qualitative study explored the health needs of elderly Chinese male cardiac patients during their hospitalization. Eighteen subjects were recruited from a veterans' hospital in northern Taiwan. These men all lived alone before their hospital admission. Data were gathered using semistructured interviews and then analysed by content analysis. Ninety-four per (...) cent of the subjects described up to three categories of needs: met needs (72%), unmet needs (78%), and expected needs (50%0). Needs that participants believed were met were those for psychological support, spiritual support, tangible support and information. Unmet needs were those for participation in decision making, maintaining daily activities and resuming a preadmission lifestyle. The expected needs included those for learning self-care strategies to maintain their daily activities after discharge from the hospital. The factors that framed the participants' perceptions of different health needs were identified to be lack of family support and locus of control. Finally, a discussion of the context background of this phenomenon, as well as some suggestions for its implications, are provided from a culturally sensitive ethical aspect. (shrink)

In current mental health care psychiatric conditions are defined as compilations of symptoms. These symptom-based disease categories have been severely criticised as contingent and boundless, facilitating the rise to epidemic proportions of such conditions as depression. In this article we look beyond symptoms and stress the role of epidemiology in explaining the current situation. By analysing the parallel development of cardiovascular disease and depression management in Finland, we argue, firstly, that current mental health care shares with the medicine (...) of chronic somatic conditions an attachment to risk factor epidemiology, which accentuates risk and prevention in disease management. However, secondly, due to the symptom-based definitions of psychiatric conditions, depression management cannot differentiate properly between symptoms, signs and risk factors such as, for example, cardiovascular medicine, but treats symptoms as signs or risk factors in contexts of treatment and prevention. Consequently, minor at-risk conditions have become difficult to separate from proper cases of depression. (shrink)

Chagas disease or American trypanosomiasis is an important health problem in Latin America. Due to the mobility of Latin American population around the world, countries without vector presence started to report disease cases. We developed a deterministic compartmental model in order to gain insights into the disease dynamics in a scenario without vector presence, considering congenital transmission and transmission by blood transfusion. The model was used to evaluate the epidemiological effect of control measures. It was applied (...) to demographic data from Spain and sensitivity analysis was performed on model parameters associated with control strategies. (shrink)

BackgroundUnderstanding representations of disease in various art genres provides insights into how patients and health care providers view the diseases. It can also be used to enhance patient care and stimulate patient self-management.MethodsThis paper reviews how cardiovascular diseases are represented in novels, films, and paintings: myocardial infarction, aneurysm, hypertension, stroke, heart transplantation, Marfan’s disease, congestive heart failure. Various search systems and definitions were used to help identify sources of representations of different cardiovascular diseases. The representations of (...) the different diseases were considered separately. The Common Sense Model was used a theoretical model to outline illness perceptions and self-management in the various identified novels, films, and paintings.ResultsMyocardial infarction followed by stroke were the most frequently detailed diseases in all three art genres. This reflects their higher prevalence. Representations ranged from biomedical details through to social and psychological consequences of the diseases.ConclusionsArtistic representations of cardiovascular diseases reflect cognitions, emotions, and images of prevalent disease. These representations shape views and behaviour of ill and healthy persons regarding heart diseases. As these representations are amenable to change, they deserve further research, which may be instrumental in improving the quality of life of persons struck by cardiovascular diseases. Changing illness perceptions appears to be a method to improve self-management and thereby quality of life in patients with various cardiovascular diseases. (shrink)