PurposeContinuous patient-reported outcomes to identify and address patients’ needs represent an important addition to current routine care. The aim of this study was to identify and determine important dimensions of health-related quality of life in routine oncological care.MethodsIn a cross-sectional qualitative study, interviews and focus groups were carried out and recorded. The interviewees were asked for their evaluation on HrQoL in general and specifically regarding cancer treatment. The material was transcribed and analyzed using qualitative content analysis based on Mayring. (...) The results were reviewed in an expert discussion.ResultsInterviews with patients and clinicians, as well as five focus groups with clinicians were conducted. Initially, nine deductive and two inductive categories on HrQoL were built. Four categories were excluded following the qualitative content analysis because they were hardly or not at all mentioned by participants. Following on from the analysis of the expert discussion, one dimension was added, and two further categories were excluded. The resulting system consisted of six dimensions: emotional health, physical ailments, autonomy, social functionality, dignity, and resources.ConclusionThe identified dimensions of HrQoL in routine oncological care were found to differ from those used in existing HrQoL measurements for patients. Further research is needed to test and evaluate the presented structure in a larger sample of cancer patients to further assess its psychometric properties. (shrink)

Twitter integrates with streaming data technologies and machine learning to add new value to healthcare. This paper presented a real-time system to predict breast cancer based on streaming patient’s health data from Twitter. The proposed system consists of two major components: developing an offline building model and an online prediction pipeline. For the first component, we made a correlation between the features to determine the correlation between features and reduce the number of features from the Breast Cancer Wisconsin Diagnostic (...) dataset. Two feature selection algorithms are recursive feature elimination and univariate feature selection algorithms which are applied to features after correlation to select the essential features. Four decision trees, logistic regression, support vector machine, and random forest classifier have been used on features after correlation and feature selection. Also, hyperparameter tuning and cross-validation have been applied with machine learning to optimize models and enhance accuracy. Apache Spark, Apache Kafka, and Twitter Streaming API are used to develop the second component. The best model with the highest accuracy obtained from the first component predicts breast cancer in real time from tweets’ streaming. The results showed that the best model is the random forest classifier which achieved the best accuracy. (shrink)

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

Personal positions and voices of a patient diagnosed with borderline personality disorder and the therapist during long-term psychotherapy were studied aiming to find differences in the patterns formed in these aspects of subjectivity according to the level of elaboration of the change episodes achieved by the patient. This case study considered a stage of qualitative analysis where change episodes of the patient were traced through the Change Episodes Model. Later, through the Model of Analysis of Discursive Positioning (...) in Psychotherapy, the voices and personal positions of the patient and her therapist were identified in each of the change episodes. In the stage of quantitative analysis, dynamic patterns in the voices and personal positions were established, accounting for hypothetical attractors using the Space State Grid technique in each of the three different levels of subjective elaboration that constitute the change episodes. The results established differentiated dynamic patterns in the change episodes, coherent with the patient’s change process, and formation of propositive/reflective specific patterns as the patient evolved in the three different levels of subjective elaboration. The above suggests that a subjective transformation process is displayed, and this is manifested in the different voices and personal positions that emerged as the change episodes evolve. The identified dynamic patterns can be considered nonlinear and emergent subjective exchanges between the patient and the therapist throughout the psychotherapy. (shrink)

Caring for unrepresented patients encompasses legal, ethical, and moral challenges regarding decision-making, consent, the patient’s values, wishes, best interest, and the healthcare team’s professional integrity and autonomy. In this article, I consider the impact of the aging population and the effects of the social determinants of health and suggest that without preventive intervention, the number of unrepresented patients will continue to increase. The health, social, and legal risk factors for becoming unrepresented require a multidisciplinary response. Medical-Legal Partnerships (MLPs) bring (...) healthcare and legal professionals together to address risk factors and health-harming legal needs. The article discusses the role of MLPs in identifying at-risk individuals, providing preventive interventions, and providing support. I make recommendations and conclude that proactive MLPs offer a sustainable approach to the ethical challenges in caring for unrepresented patients by providing interventions to prevent individuals from becoming unrepresented. (shrink)

To ensure that the information resulting from research is relevant to patients, the Patient‐Centered Outcomes Research Institute eschews the “traditional health research” paradigm, in which investigators drive all aspects of research, in favor of one in which patients assume the role of research partner. If we accept the premise that patient engagement can offer fresh perspectives that shape research in valuable ways, then at least two important sets of questions present themselves. First, how are patients being engaged—and how (...) should they be engaged? Second, which patients are being engaged—and which patients should be? This set has received relatively less attention, and the neglect is surprising, given that the “who” question is conceptually prior to the question of “how.”This article focuses attention on the “who” of patient engagement in research. First, we provide background on the rationale for patient engagement, underscoring the importance of ensuring the representativeness of engaged patients. Second, we present what little is known about patients engaged in PCORI‐funded research. Third, we identify and discuss the ethical implications of ways in which current practices of patient identification and recruitment may lead to a lack of representativeness. These practices include reliance on the well‐connected and well‐informed, reliance on patients who are not well trained or well‐informed, and reliance on patient advocacy organizations. Finally, we consider several strategies for addressing these pitfalls in order to maximize the positive goals of patient engagement. Patient engagement is intended to address the inability of researchers, funders, and others to fully represent patient views and priorities, but without sufficient attention, the patients selected for this role may still leave important gaps. (shrink)

Cancer is fast becoming an alarming cause of human death. However, it has been reported that if the disease is detected at an early stage, diagnosed, treated appropriately, the patient has better chances of survival long life. Machine learning technique with feature-selection contributes greatly to the detecting of cancer, because an efficient feature-selection method can remove redundant features. In this paper, a Fuzzy Preference-Based Rough Set (FPRS) blended with Support Vector Machine (SVM) has been applied in order to predict (...) cancer biomarkers for biological and gene expression datasets. Biomarkers are determined by deploying three models of FPRS, namely, Fuzzy Upward Consistency (FUC), Fuzzy Downward Consistency (FLC), and Fuzzy Global Consistency (FGC). The efficiency of the three models with SVM on five datasets is exhibited, and the biomarkers that have been identified from FUC models have been reported. (shrink)

Background Informed consent is an integral component of good medical practice. Many researchers have investigated measures to improve the quality of informed consent, but it is not clear which techniques work best and why. To address this problem, we propose developing a core outcome set to evaluate interventions designed to improve the consent process for surgery in adult patients with capacity. Part of this process involves reviewing existing research that has reported what is important to patients and doctors in the (...) informed consent process. Methods This qualitative synthesis comprises four phases: identification of published papers and determining their relevance; appraisal of the quality of the papers; identification and summary of the key findings from each paper while determining the definitiveness of each finding against the primary data; comparison of key themes between papers such that findings are linked across studies. Results Searches of bibliographic databases returned 11,073 titles. Of these, 16 studies met the inclusion criteria. Studies were published between 1996 and 2016 and included a total of 367 patients and 74 health care providers. Thirteen studies collected data using in-depth interviews and constant comparison was the most common means of qualitative analysis. A total of 94 findings were extracted from the primary papers and divided into 17 categories and ultimately 6 synthesised findings related to: patient characteristics, knowledge, communication, the model patient, trust and decision making. Conclusions This qualitative meta-aggregation is the first to examine the issue of informed consent for surgery. It has revealed several outcomes deemed important to capture by patients and clinicians when evaluating the quality of a consent process. Some of these outcomes have not been examined previously in research comparing methods for informed consent. This review is an important step in the development of a COS to evaluate interventions designed to improve the consent process for surgery. Registration The study protocol was registered on the international prospective register for systematic reviews. (shrink)

Background: Family therapy is considered as the gold standard in treatment of adolescents with anorexia nervosa (AN). Among the different types of family therapy, multi-family therapy (MFT) is increasingly used for treating AN, and shows promising results. In this article, our focus relied on the patients’ and their parents’ perceptions of the effectiveness and the underlying mechanisms of the MFT. Methods: The present pilot exploratory qualitative study included two focus groups conducted using a semi-structured approach: one with the adolescents (n= (...) 3), and another with one or two of their parents (n= 4 mothers;n= 2 fathers). The subjects discussed were the changes observed in both AN symptoms and family interactions following therapy, and the mechanisms underlying these changes. We crossed the perspectives of the adolescents and of the parents on these two points. Results: Qualitative analysis revealed that while both adolescents and parents had difficulties relating the changes they observed in the last year to MFT, they were able to say that the group cohesion had several positive effects and that their family dynamics had improved. In the light of analysis the adolescents perceived more improvements related eating disorders symptoms than their parents did, while parents were concerned about a negative effect of MFT on their children. Discussion: While both patients and parents perceived improvements in both AN symptoms and family interactions in the past year, it was not clear if they considered MFT to have led to these improvements. FG also explored the MFT mechanisms underlying changes. Both adolescents and their parents stressed the beneficial effects of identification to others members of the group and shared experience to overcome social isolation. Parents also mentioned the sympathy they felt for each other. The idea that they give a central place to families in the therapy was also described by the families. (shrink)

The autonomy of chronic patients in Iranian hospitals is challenged by impaired functioning resulting from chronic illness, a negative image in society, and effects related to hospitalization. Comprehensive interviews and observations of 34 patients, nurses, and physicians were performed to assess the autonomy of chronic patients in Iran. Conceptualization, constant comparison, and the combination of data resulted in the identification of 5 main categories related to autonomy: welcoming paternalism, self-expression, self-proof, shared decision making, and self-determination. Authority scrambling was a (...) central category describing chronic patients’ perceptions of their autonomy during hospitalization. These patients sought to maintain their independence despite serious threats to their autonomy. (shrink)

Burnout has been recognized as a serious health problem. In Portugal, before COVID-19 Pandemic, there were strong indicators of high prevalence of burnout in physicians and nurses. However, the Portuguese Health Care Service was able to efficiently respond to the increased demands. This study intends to understand how psychosocial variables might have been protective factors for burnout in physicians and nurses in Portugal. Specifically, we considered several psychosocial variables that have been found to be protective factors for burnout in previous (...) research and we compared their predictive and unique impact in the prediction of burnout. These variables are perceptions of justice (distributive, procedural, justice from colleagues, justice from patients, and their families), professional identification, meaningful work and empathy. We also included workload, as a risk factor, and controlled other variables that can be confounds for burnout, such as socio-demographic variables, ideological variables (religiosity, political orientation), and specific variables related with COVID-19 pandemic. The sample of the present study is composed by 229 physicians (aged between 23 and 70 years old,M= 36.54;SD= 10.72; 48% male and 52% female) and 268 nurses (aged between 22 and 69 years old,M= 34.96;SD= 9.52; 27% male and 73% female). An online survey was created using Qualtrics and participants were recruited via Facebook and LinkedIn. The data were collected during 29 days (between the 45th and the 74th days after the first diagnosed case of COVID-19 in Portugal). The results showed that workload was a significant risk factor, except for disengagement in physicians. The most consistent protectors across samples were procedural justice (for both dimensions of burnout, both in physicians and nurses) and professional identification (for disengagement, both in physicians and nurses; for exhaustion only in physicians). This study suggests that decreasing workload and promoting procedural justice and professional identification are key factors that might be simultaneously and independently addressed in interventions for reducing the risk of burnout or preventing it from occurring in the first place. (shrink)

How exactly does a patient succeed in imposing a phantasy and its corresponding affect upon his analyst in order to deny it in himself is a most interesting problem… In the analytic situation, a peculiarity of communication[s] of this kind is that, at first sight, they do not seem as if they had been made by the patient at all. The analyst experiences the affect as being his own response to something. The effort involved is in differentiating the (...) patient's contribution from his own. 1My title, 'Understanding Projective Identification,' is intentionally ambiguous. In this paper, I aim both to show how the psychoanalyst comes to understand what the patient is trying to communicate in projective... (shrink)

This article reviews the use of implantable radiofrequency identification (RFID) tags in humans, focusing on the VeriChip (VeriChip Corporation, Delray Beach, FL) and the associated VeriMed patient identification system. In addition, various nonmedical applications for implanted RFID tags in humans have been proposed. The technology offers important health and nonhealth benefits, but raises ethical concerns, including privacy and the potential for coercive implantation of RFID tags in individuals. A national discussion is needed to identify the limits of (...) acceptable use of implantable RFID tags in humans before their use becomes widespread and it becomes too late to prevent misuse of this useful but ethically problematic technology. (shrink)

The question a judge has to ask in deciding whether or not life-sustaining treatment should be withdrawn is whether the continued treatment is lawful. It will be lawful if it is in the patient’s best interests. Identifying this question gives no guidance about how to approach the assessment of best interests. It merely identifies the judge’s job. The presumption in favour of the maintenance of life is part of the job that follows the identification of the question.The presumption (...) is best regarded as a presumption of law. It has long been recognised as part of the way in which the English law discharges its obligations under Article 2 of the European Convention on Human Rights. But even if it is a ‘mere’ evidential presumption it cannot, on the facts of most cases involving applications for the withdrawal of life-sustaining treatment from patients in prolonged disorders of consciousness, be rebutted. (shrink)

The purpose of this article is to discuss the ethical issues impacting the phenomenon of patient safety and to present implications for nursing management. Previous knowledge of this perspective is fragmented. In this discussion, the main drivers are identified and formulated in ‘the ethical imperative’ of patient safety. Underlying values and principles are considered, with the aim of increasing their visibility for nurse managers’ decision-making. The contradictory nature of individual and utilitarian safety is identified as a challenge in (...) nurse management practice, together with the context of shared responsibility and identification of future challenges. As a conclusion, nurse managers play a strategic role in patient safety. Their role is to incorporate ethical values of patient safety into decision-making at all levels in an organization, and also to encourage clinical nurses to consider values in the provision of care to patients. Patient safety that is sensitive to ethics provides sustainable practice where the humanity and dignity of all stakeholders are respected. (shrink)

Documenting capacity assessments and identifying substitute decisionmakers in healthcare facilities is ethically required for optimal patient care. Lack of such documentation has the potential to generate confusion and contention among patients, their family members, and members of the healthcare team. An overview of our research at the Ottawa Hospital and issues that influence the consistency of documentation in the Canadian context are presented here, as well as ideas for the mitigation of these issues and ways to encourage better documentation.

This article addresses some critical aspects of the relationship between aesthetic medicine (AM) and ethics and proposes a possible deontological ethical line to pursue based on current practices. The role of AM has always been controversial and suffers from unclear practical and moral boundaries, even within academic settings, since it aims to improve the appearance of individuals, not to cure a disease. Today, it is essential and pertinent to discuss these issues, as AM specialists are dealing with a growing and (...) increasingly demanding patient population that has undergone profound evolution in recent years. Current challenges within the field of AM include a lack of global uniformity concerning the education of AM specialists, an increasing number of physicians practicing AM with diverse training backgrounds, the spread of AM being practiced outside of medical practice or hospital settings, and the influence of social media where the success is modelled and dictated by the identification of a youthful appearance). By the field of action enriched by technologies that aim not only at enhancement per se but also at the preservation and regeneration of tissues, it is necessary to establish an active multidisciplinary discussion on the definition of shared ethical limits. This discussion would allow AM to fully reclaim its identity as a specialty that aims to improve patient well-being whilst maintaining respect for patient aesthetic harmony, the expertise of specialists who practice AM, the essential role of safety, and awareness of the importance of a confidential doctor−patient relationship. (shrink)

In the United States, approximately 2.53 million people sustain a concussion each year. Relative to adults, youth show greater cognitive deficits following concussion and a longer recovery. An accurate and reliable imaging method is needed to determine injury severity and symptom resolution. The primary objective of this study was to characterize concussions with diffusion tensor imaging. This was performed through a normative Z-scoring analysis of DTI metrics, fractional anisotropy, axial diffusivity, and radial diffusivity, to quantify patient-specific injuries and identify (...) commonly damaged brain regions in paediatric concussion patients relative to healthy controls. It was hypothesized that personalizing the detection analysis through normative Z-scoring would provide an understanding of trauma-induced microstructural damage. Concussion patients were volunteers recruited from the Emergency Department of the McMaster Children’s Hospital with a recent concussion, 9 males and 17 females, mean age 14.22 ± 2.64, while healthy paediatric brain DTI datasets were obtained from an MRI data repository. Significant abnormalities were commonly found in the longitudinal fasciculus, fronto-occipital fasciculus, and corticospinal tract, while unique abnormalities were localized in a number of other areas reflecting the individuality of each child’s injury. Total injury burden, determined by the number of regions containing outliers per DTI metric per patient, was used as the metric to quantify the overall injury severity of each patient. The primary outcome of this analysis found that younger patients experienced a significantly greater injury burden when measured using fractional anisotropy. These results show that DTI was able to detect microstructural changes caused by concussion, on a per-person basis, and has the potential to be a useful tool for improving diagnostic accuracy and prognosis of a concussion. (shrink)

In this study, we investigate the use of narrative in online conversations among persons suffering from chronic opiate addiction and evaluate both its positive and negative uses. Illness narratives, as argued by sociologist Arthur Frank and psychiatrist/medical anthropologist Arthur Kleinman, enable patients to give order to life experiences and receive support from others. We wished to explore under what circumstances online support coalesces and breaks apart. The narratives we examined exemplify two topics frequently discussed on the message board: the recovery (...) process and what it means to be ‘clean’. To better understand these narratives from a theoretically based approach, we used the work of rhetorical theorist Kenneth Burke. Burke's description of two human motives, suffering and perfection, led us to an understanding of how unification and division happened within the online community. We found that the recovery narrative primarily embodied the author's suffering and, consequently, received support from other members of the message board. The second narrative centered on what it means to be ‘clean’ through a discussion of the author's desire to court temptation, revealing what Burke calls the rotten nature of perfection. As a result, the author of the narrative provoked disagreements and did not receive support. (shrink)

BackgroundPsychological distress is common among infertility patients. Total scale scores are often used to represent the severity of anxiety, depression, or stress, which ignores important differences between specific symptoms, and relationships between symptoms. This study aimed to identify patterns of psychological distress experienced by infertility patients and to identify the most central symptoms of anxiety, depression, and stress.MethodFrom June to September 2016, 740 infertility patients were included in this cross-sectional study. Infertility patients were asked to complete the Generalized Anxiety Disorder-7, (...) Patients Health Questionnaire-9 (PHQ-9), and Fertility Problem Inventory. Network analysis was used to examine the patterns of psychological distress in infertility patients and to test the most central symptoms of anxiety, depression, and stress.ResultsRestlessness was the most central symptom in infertility patients. “Feelings of guilt” had the highest strength among PHQ-9 symptoms. “Relationship concern stress” and “sexual concern stress” had the strongest connections in the network. Stability estimation indicated that the order of node strength centrality was more stable than the order of closeness and betweenness (the CS-coefficients were 0.75, 0.13, and 0.67, respectively). In addition, network structure and global strength were invariant across gender.LimitationsThe cross-sectional design did not permit identification of causal relationships. Patients in this study were recruited from one reproductive hospital; especially, most patients had low socioeconomic status, which limits generalizability of the findings.ConclusionThis study reinforces the need to better understand the underlying causes of psychological distress in infertile patients. A more detailed investigation of the relationship between these symptoms could provide information for psychosocial interventions aimed beyond “alleviating psychological distress.” We should consider the individual psychological symptom pattern and its potential causes in infertility patients instead of assuming a consistent psychological distress structure. (shrink)

Delusional misidentification is commonly understood as the product of an inference on the basis of evidence present in the subject's experience. For example, in the Capgras delusion, the patient sees someone who looks like a loved one, but who feels unfamiliar, so they infer that they must not be the loved one. I question this by presenting a distinction between “recognition” and “identification.” Identification does not always require recognition for its epistemic justification, nor does it need recognition (...) for its psychological functioning. Judgments of identification are often the product of a non-inferential mechanism. Delusional misidentification arises as the product of this mechanism malfunctioning. (shrink)

Our aim was to study how nurses interpret patient autonomy in end-of-life decision making. This study built on our previous quantitative study, which evaluated the experiences of and views on end-of-life decision making of a representative sample of Finnish nurses taken from the whole country. We performed qualitative interviews with 17 nurses and analysed these using discourse analysis. In their talk, the nurses demonstrated three different discourses, namely, the ‘supporter’, the ‘analyst’ and the ‘practical’ discourses, each of which outlined (...) a certain position for patients and relatives, and a certain identity for the nurses in end-of-life decision making. The nurses’ talk showed notable differences when compared with that of physicians, highlighting the differences that take place in respect of the image of a person’s work, professional culture, professional identification and responsibilities. An important finding was that the nurses often described their participation in end-of-life decision making in terms of indirect influence. (shrink)

BackgroundThis manuscript presents a framework to guide the identification and assessment of ethical opportunities and challenges associated with electronic patient records (EPR). The framework is intended to support designers, software engineers, health service managers, and end-users to realise a responsible, robust and reliable EPR-enabled healthcare system that delivers safe, quality assured, value conscious care.MethodsDevelopment of the EPR applied ethics framework was preceded by a scoping review which mapped the literature related to the ethics of EPR technology. The underlying (...) assumption behind the framework presented in this manuscript is that ethical values can inform all stages of the EPR-lifecycle from design, through development, implementation, and practical application.ResultsThe framework is divided into two parts: context and core functions. The first part ‘context’ entails clarifying: the purpose(s) within which the EPR exists or will exist; the interested parties and their relationships; and the regulatory, codes of professional conduct and organisational policy frame of reference. Understanding the context is required before addressing the second part of the framework which focuses on EPR ‘core functions’ of data collection, data access, and digitally-enabled healthcare.ConclusionsThe primary objective of the EPR Applied Ethics Framework is to help identify and create value and benefits rather than to merely prevent risks. It should therefore be used to steer an EPR project to success rather than be seen as a set of inhibitory rules. The framework is adaptable to a wide range of EPR categories and can cater for new and evolving EPR-enabled healthcare priorities. It is therefore an iterative tool that should be revisited as new EPR-related state-of-affairs, capabilities or activities emerge. (shrink)

Background: It has been reported that type 2 diabetes is associated with olfactory identification impairments and cognitive decline. However, the relationship between OI impairments and cognitive decline is largely unknown in T2DM patients.Methods: Sixty-eight T2DM patients and 68 healthy controls underwent 3D-T1 MRI scans, olfactory and cognitive assessments. The cortical thickness of olfaction-related brain regions, olfactory and cognitive scores were compared between groups. Correlation analyses were carried out among cognition, olfaction, and cortical thickness of olfaction-related brain regions.Results: First, the (...) cognitive and olfactory test scores of T2DM patients were lower than healthy subjects. Second, higher olfactory scores were associated with increased cortical thickness in the left parahippocampal gyrus and bilateral insula in T2DM. Third, higher olfactory scores were associated with higher cognitive performance in T2DM. Fourth, some cognitive performances were related to cortical thickness in the left parahippocampal gyrus and left insula in T2DM.Conclusion: These findings indicated that olfactory dysfunction may be useful for future applications that attempt to predict cognitive decline or develop tailored therapies in T2DM patients. (shrink)

Platforms for sharing genomic and phenotype data have been developed to promote genomic research, while maximizing the utility of existing datasets and minimizing the burden on participants. The value of genomic analysis of trios or family members has increased, especially in rare diseases and cancers. This article aims to argue the necessity of protection when sharing data from both patients and family members. Sharing patients’ and family members’ data collectively raises an ethical tension between the value of datasets and the (...) rights of participants, and increases the risk of re-identification. However, current data-sharing policies have no specific safeguards or provisions for familial data sharing. A quantitative survey conducted on 10,881 general adults in Japan indicated that they expected stronger protection mechanisms when their family members’ clinical and/or genomic data were shared together, as compared to when only their data were shared. A framework that respects decision-making and the right of withdrawal of participants, including family members, along with ensuring usefulness and security of data is needed. To enable this, we propose recommendations on ancillary safeguards for familial data sharing according to the stakeholders, namely, initial researchers, genomic researchers, data submitters, database operators, institutional review boards, and the public and participants. Families have played significant roles in genetic research, and its value is re-illuminated in the era of genomic medicine. It is important to make progress in data sharing while simultaneously protecting the privacy and interests of patients and families, and return its benefits to them. (shrink)

Fregoli delusion is the mistaken belief that some person currently present in the deluded person's environment is a familiar person in disguise. The stranger is believed to be psychologically identical to this known person even though the deluded person perceives the physical appearance of the stranger as being different from the known person's typical appearance. To gain a deeper understanding of this contradictory error in the normal system for tracking and identifying known persons, we conducted a detailed survey of all (...) the Fregoli cases reported in the literature since the seminal Courbon and Fail paper. Our preliminary reading of these cases revealed a notable lack of definitional clarity. So, we first formulated a classification scheme of different person misidentification delusions so as to identify those cases that qualified as instances of Fregoli according to the above characterization: the mistaken belief that a known person is present in the environment in a different guise to his or her typical appearance. We identified 38 clear cases of this type and set out to answer a series of questions motivated by current hypotheses about the origin of the Fregoli delusion. We asked whether the patients misidentified particular strangers, made reference to the misidentified known persons using wigs or plastic surgery , misidentified many different strangers or only one, showed other symptoms , and made inferences about the motives of the known persons in disguise. We conclude by discussing the implications of our findings for current hypotheses concerning the origin of the Fregoli delusion. (shrink)

Objective: To evaluate whether ethics rounds stimulated ethical reflection. Methods: Philosopher-ethicist-led interprofessional team ethics rounds concerning dialysis patient care problems were applied at three Swedish hospitals. The philosophers were instructed to stimulate ethical reflection and promote mutual understanding between professions but not to offer solutions. Questionnaires directly before and after rounds were answered by 194 respondents. The analyses were primarily content analysis with Boyd’s framework but were also statistical in nature. Findings: Seventy-six per cent of the respondents reported a (...) moderate to high rating regarding new insights on ethical problem identification, but the ethics rounds did not seem to stimulate the ethical reflection that the respondents had expected (p<0.001). Dominant new insights did not seem to fit into traditional normative ethics but were instead interpreted as hermeneutic ethics. This was illustrated in the extended perspective on the patient and increased awareness of relations to other professions. Regarding insights into how to solve ethical problems, the request for further interprofessional dialogue dominated both before and after rounds. Conclusion: The findings show the need for interprofessional reflective ethical practice but a balance between ethical reflection and problem solving is suggested if known patients are discussed. Further research is needed to explore the most effective leadership for reflective ethical practice. (shrink)

ABSTRACT A key selling point of pharmacogenetics is the genetic stratification of either patients or diseases in order to target the prescribing of medicine. The hope is that genetically ‘tailored’ medicines will replace the current ‘one‐size‐fits‐all’ paradigm of drug development and usage. This paper is concerned with the relationship between difference and justice in the use of pharmacogenetics. This new technology, which facilitates the identification and use of difference, has, we shall argue, the potential to lead to injustice either (...) by the inappropriate use of difference or through the inappropriate failure to use difference. We build on empirical data from a detailed study of the range of options for the development of pharmacogenetics to present a consideration of the ethical issues that surround patient and disease stratification. In it we explore the ways in which the use of pharmacogenetics may lead to the creation of new, genetically stratified, forms of difference and new forms of injustice based on these divisions. We also examine the ways in which existing forms of difference and social stratification may interact with the use of pharmacogenetics. In conclusion, we suggest how an understanding of these ethical issues could usefully inform future policy discussions. (shrink)

‘Individualized medicine’ is an emerging paradigm in clinical life science research. We conducted a socio-empirical interview study in a leading German clinical research group, aiming at implementing ‘individualized medicine’ of colorectal cancer. The goal was to investigate moral and social issues related to physician–patient interaction and clinical care, and to identify the points raised, supported and rejected by the physicians and researchers. Up to now there has been only limited insight into how experts dedicated to individualized medicine view its (...) problems. Interviews with researchers and clinicians were based on a prestructured questionnaire. The content analysis revealed a broad spectrum of opinions. Major findings were disappointments with the limits of the current therapy regimen and clinical practice; problematic impacts on physician–patient relationship; and an informed consent procedure which is mainly based on paternalistic assumptions. According to our analysis, major problems will be uncertainties related to the biomarker's sensitivity and specificity, and the identification of ‘non-responders’. However, the findings also indicate that experts expect evidence-based medicine to replace decisions based on gut feeling or hierarchical structures. (shrink)

‘Individualized medicine’ is an emerging paradigm in clinical life science research. We conducted a socio-empirical interview study in a leading German clinical research group, aiming at implementing ‘individualized medicine’ of colorectal cancer. The goal was to investigate moral and social issues related to physician–patient interaction and clinical care, and to identify the points raised, supported and rejected by the physicians and researchers. Up to now there has been only limited insight into how experts dedicated to individualized medicine view its (...) problems. Interviews with researchers and clinicians (n= 19) were based on a prestructured questionnaire. The content analysis revealed a broad spectrum of opinions. Major findings were (a) disappointments with the limits of the current therapy regimen and clinical practice; (b) problematic impacts on physician–patient relationship; and (c) an informed consent procedure which is mainly based on paternalistic assumptions. According to our analysis, major problems will be uncertainties related to the biomarker's sensitivity and specificity, and the identification of ‘non-responders’. However, the findings also indicate that experts expect evidence-based medicine to replace decisions based on gut feeling or hierarchical structures. (shrink)

Some have characterized patients living with intractable pain as a vulnerable population in both clinical and research settings. Labeling the population as vulnerable, however, does not provide clarity regarding the potential risks that they face when they participate in research. Instead, research vulnerability for patients in pain is a function of an interaction between their pain conditions and elements of the research enterprise. Therefore, the identification of potential risks requires consideration not only of characteristics of patients with chronic pain, (...) but also consideration of features of researchers, the quality of institutional oversight, and the medical/social environment within which the research is conducted. This paper provides an analysis of those risks and provides some suggestions as to how the risks might be better managed. (shrink)

Rett syndrome (RTT) is an X‐linked dominant neurodevelopmental disorder affecting almost exclusively girls. Although mutations in methyl‐CpG‐binding protein (MeCP2) are known to be associated with RTT, gene expression patterns are not significantly altered in MeCP2‐deficient cells. A recent study1 identified MeCP2‐mediated histone modification and formation of a higher‐order chromatin loop structure specifically associated with silent chromatin at the Dlx5–Dlx6 locus in normal cells, and its absence thereof in RTT patients. This altered expression of Dlx5 through loss of silent chromatin loop (...) formation provides a molecular mechanism underlying RTT and proposes a novel role for MeCP2 in chromatin organization and imprinting. © 2005 Wiley Periodicals, Inc. BioEssays 27:676–680, 2005. © 2005 Wiley Periodicals, Inc. (shrink)

Social representations of addiction and the resulting stigmatization have been widely described and studied in the literature, but their effects are no less problematic. These representations, which also occur in care settings, generate a climate of distrust which damages the therapeutic relationship, and its ethical quality. This article, combining clinical experience and an ethical stance, offers an original, innovating approach to the existence of distrust in care relationships in the area of addiction. Pragmatic approaches deriving from the human sciences and (...) analytical philosophy provide an invitation to escape from the demanding climate of mistrust, and to take the gamble on trust so as to improve the quality of interactions between protagonists in care. In complementary fashion, a sociology of action can combat the disquiet generated by distrust through a new commitment to innovating forms of action. This “poetic” mode of action is legitimized by the reflection that backs it up, and by its presentation to peers qualified to approve it. Finally, continental moral philosophy underlines the importance of a carefully weighed commitment on the part of caregivers and addicted patients towards promises aiming to support a sincere care relationship, without damaging the therapeutic dynamic or the ethical quality by providing too many safety nets. This reflection is intended to achieve better identification of the clinical and ethical issues raised by mistrust, and inclusion of these aspects in the training of personnel and in care provision planning. (shrink)

About one third of patients with epilepsy have seizures refractory to the medical treatment. Electrical stimulation mapping is the gold standard for the identification of “eloquent” areas prior to resection of epileptogenic tissue. However, it is time-consuming and may cause undesired side effects. Broadband gamma activity recorded with extraoperative electrocorticography during cognitive tasks may be an alternative to ESM but until now has not proven of definitive clinical value. Considering their role in cognition, the alpha and beta bands could (...) further improve the identification of eloquent cortex. We compared gamma, alpha and beta activity, and their combinations for the identification of eloquent cortical areas defined by ESM. Ten patients with intractable focal epilepsy participated in a delayed-match-to-sample task, where syllable sounds were compared to visually presented letters. We used a generalized linear model approach to find the optimal weighting of each band for predicting ESM-defined categories and estimated the diagnostic ability by calculating the area under the receiver operating characteristic curve. Gamma activity increased more in eloquent than in non-eloquent areas, whereas alpha and beta power decreased more in eloquent areas. Diagnostic ability of each band was close to 0.7 for all bands but depended on multiple factors including the time period of the cognitive task, the location of the electrodes and the patient’s degree of attention to the stimulus. We show that diagnostic ability can be increased by 3–5% by combining gamma and alpha and by 7.5–11% when gamma and beta were combined. We then show how ECoG power modulation from cognitive testing can be used to map the probability of eloquence in individual patients and how this probability map can be used in clinical settings to optimize ESM planning. We conclude that the combination of gamma and beta power modulation during cognitive testing can contribute to the identification of eloquent areas prior to ESM in patients with refractory focal epilepsy. (shrink)

A large proportion of hospital inpatients are affected by cognitive impairment, posing challenges in the provision of their care in busy, fast-paced acute wards. Signs and symbols, known as visual identifiers, are employed in many U.K. hospitals with the intention of helping healthcare professionals identify and respond to the needs of these patients. Although widely considered useful, these tools are used inconsistently, have not been subject to full evaluation, and attract criticism for acting as a shorthand for a routinized response. (...) In order for visual identifiers to be used effectively in acute care settings, thorough consideration must be given to the ethical and legal issues that are engaged in this context, and their potential benefits and harms must be weighed and balanced. This paper proposes a set of legal and ethical principles that can be used to guide the implementation of visual identifiers. Together, these principles provide a framework applicable in the design and implementation phases to systematically identify relevant considerations arising from the use of these tools. We outline some tensions that arise between principles and conclude that selecting a preferred moral framework could help to guide decision-making, as does clarity around the purpose and objectives of the identifier. (shrink)

Data-sharing among genomic researchers is promoted for its potential to accelerate our understanding of the molecular basis of cancer. However, with genomic data sharing the risks of re-identifying study participants, revealing personal genomic information and data misuse might increase. This study aims at exploring perceptions of patients and physicians in Oncology regarding their assessment of the informational risks resulting from participating in whole genomic research studies in order to improve the informed consent process. For this purpose, we conducted a qualitative (...) focus group study at the National Center for Tumor Diseases. Patients and oncologists assessed the informational risks either as minimal or as greater than minimal, depending on the context factors of occupational status, age, and patients’ prognosis. Interestingly, even patients who assumed a greater risk did not refrain from participating in genomic research, provided that certain informational and institutional safeguards are implemented. Moreover, they expected comprehensive disclosure of the risks resulting from genomic data sharing. These results suggest comprehensive disclosure of the risks of genomic research to potential study participants in genomic research to facilitate risk assessment and sound decision making, establishing independent governance entities in order to minimize the informational risks of genomic research, and implementing data sharing policies which offer guidance for physicians and researchers involved in genomic research. (shrink)

Background and aims: Liver transplantation provides an opportunity of survival for patients with liver failure, however, this procedure is known to be psychologically and physically fatiguing for patients and their informal caregivers. The aim of this study was to investigate how perceived social support and the distribution of dependency were associated with the psychological wellbeing of patients waiting for liver transplantation and their caregivers, as a dyad. Methods: The present was a cross sectional study. 95 participants were recruited at a (...) hospital in Northern Italy, during the psychological evaluation for inclusion in the transplantation list: 51 patients (19 with alcohol-related illness), and 44 family caregivers. Both patients and caregivers filled in a Symptom Checklist and Kelly's Dependency Grids. Patients also compiled the Medical Outcomes Study Social-Support Survey, and caregivers the Family Strain Questionnaire Short- Form. Results: Caregivers reported important levels of strain, also strongly related to a worsening of their own and patients’ symptoms Patients with alcohol-related pathologies had a narrower social network, which corresponded to an increase in family strain. On the sample as a whole, regression analyses showed that perceived social support and dependency measures did not predict patients’ and caregivers’ symptoms. Nevertheless, cluster analysis identified a group of caregivers who distributed their dependency more and experienced lower levels of depression, anxiety and strain. Conclusions: These results suggest the usefulness of a dyadic approach in the research, prevention and care of liver diseases. A deeper comprehension of the functioning of dyads will help practitioners in the identification of situations at risk. (shrink)

Medical decision making often utilizes subjective observations to arrive at concrete judgments. The decisions frequently affect who receives scarce medical treatments and, thus, who lives or dies. In this paper, a model health status index is described. It is specific for the problem of choosing patients for hemodialysis or transplantation. Such a health status index may be designed for any medical decision involving such issues as drug treatment priorities, identification of salvageable patients, and selection of patients for scarce medical (...) treatment. This index (1) incorporates a physician''s own medical criteria and values, (2) can be modified as the data base improves, (3) assures consistency from decision to decision, and (4) can be developed and used without the help of a mathematician or computer. (shrink)

Data-sharing among genomic researchers is promoted for its potential to accelerate our understanding of the molecular basis of cancer. However, with genomic data sharing the risks of re-identifying study participants, revealing personal genomic information and data misuse might increase. This study aims at exploring perceptions of patients and physicians in Oncology regarding their assessment of the informational risks resulting from participating in whole genomic research studies in order to improve the informed consent process. For this purpose, we conducted a qualitative (...) focus group study at the National Center for Tumor Diseases (NCT). Patients and oncologists assessed the informational risks either as minimal or as greater than minimal, depending on the context factors of occupational status, age, and patients’ prognosis. Interestingly, even patients who assumed a greater risk did not refrain from participating in genomic research, provided that certain informational and institutional safeguards are implemented. Moreover, they expected comprehensive disclosure of the risks resulting from genomic data sharing. These results suggest (1) comprehensive disclosure of the risks of genomic research to potential study participants in genomic research to facilitate risk assessment and sound decision making, (2) establishing independent governance entities in order to minimize the informational risks of genomic research, and (3) implementing data sharing policies which offer guidance for physicians and researchers involved in genomic research. (shrink)

Background Coping with end-of-life issues is a major challenge for governments and health systems. Despite progress in legislation, many barriers exist to its full implementation. This study is aimed at identifying these end-of-life barriers in relation to Israel. Methods Qualitative in-depth interviews using professionals and decision makers in the health-care and related systems were carried out, along with two focus groups based on brainstorming techniques consisting of nurses and social workers. Data was managed and analyzed using Naralyzer software. Results Qualitative (...) analysis showed identification of six primary barriers: 1) law, procedures, and forms; 2) clinical aspects; 3) human aspects; 4) knowledge and skills of medical teams; 5) communication; and 6) resource allocation. These were further divided into 44 sub area barriers. Conclusions This study highlights the role of the family doctor in end-of-life by training physicians in decision-making workshops and increasing their knowledge in the field of palliative medicine. Effectively channeling resources, knowledge, and support for medical teams, by accounting for the structure and response of the units for home treatment will improve patient’s access to information on and support for end-of-life laws, as well as reduce legislative barriers in other countries that face the same issues. (shrink)